Love-ins,Lobsters &Racing CarsGreat living in late adulthood

RADICAL REDESIGN

RADICAL REDESIGN

RADICAL REDESIGN

1. Productivity Commission, 2011, Caring for Older Australians, Report No.

53, Final Inquiry Report, Canberra, p. 9.

2. McGrath, D. 2011, ‘Carer support is not only about Respite.’ Presentation

to Transforming Respite Summit, Morphettville, SA.

3. Commonwealth Department of Health and Ageing, 2003, Review of

Pricing Arrangements in Residential Aged Care, Canberra, p. 2.

4. Productivity Commission, 2011, Caring for Older Australians, Report No.

53, Final Inquiry Report, Canberra.

“Better advances would be nice”Technical innovations in science and medicine prolonging

life long ago outpaced social innovations in providing care.

We package care up into efficient bits and bobs - showering,

preparing meals, transport, and social contact - and try

to fulfil basic needs. Indeed, in the discussion about living

longer, we’ve focused mostly on who will do and pay for the

care, rather than on the meaning of care. Caring has come to

mean the provision of what is neccessary for wealfare and

maintenance. In this project we want to find ways to enable

care in the deeper sense - as an expression of interest,

concern and meaning.

“I don’t know what to do when I get older”What if we took the opportunity to reshape late adulthood and

redefined how systems, services, families and friends give

and get care? What if we saw late adulthood as a lifestage

as important and worthy of investment as childhood? What if

late adulthood wasn’t just about managing decline, but about

building capabilities and connections? What if we saw caring

as we saw parenting - an experience that’s tough, rewarding

and wholly transformative?

We want to rethink and reshape:

• Who cares - from a focus on individuals and services to

a focus on relationships and networks

• What care is for - from a focus on dependency and

fulfilling basic needs to a focus on interdependency and

living well

• How to do care - from doing things for the person being

cared for to maintaining and building capabilities and

connections.

It’s a good time to be thinking differently about the policy

and practice of care. In 2011, funding and administration of

aged care services in Australia moved from state to federal

government. The Productivity Commission released a weighty

report on the the financial future of aged care services.4 The

report talks a lot about increasing ‘consumer choice’ and

improving the ‘quality’ of care. Our work with people in the

cities of Salisbury and Unley, South Australia has given these

buzz words a richer definition.

Rather than start with statistics and numbers, this project

starts with people’s lived experiences and imagined futures.

In the pages that follow, we share people’s stories and ideas

for a new kinds of caring. Caring that moves beyond servicing

basic needs to enabling great living in late adulthood - be that

having love-ins, eating lobster, or racing cars.

Opening words

“I’ve outlived all my friends and enemies”At 86 and 91, Dudley and Daphne are living beyond the

average life expectancy. Over the last century, our life

expectancy has risen by 30 years - but, it’s not just years

we’ve added, it’s a whole new phase of life. There’s childhood,

adolescence, adulthood, late adulthood, and now, even

later adulthood.

“I suppose I could learn new things”If childhood is seen as a period of learning and growth, late

adulthood has typically been seen as a period of loss and

decline. In late adulthood, the independence we’ve gained as

adults can give way to the kind of dependency we experienced

as children. And yet our return to dependency in later life is

rarely coupled with a renewed focus on learning and growth.

“The girls come in to help for 30 minutes every morning”Just as ‘parenting’ supports children through dependency in

childhood, ‘caring’ supports older people with dependency in

older age. Once we turn 65, about a third of us will need care

to get by. And by the time, we hit our 80s, 86% of us will rely

on extra help and care, most provided by friends and family.1

“The kids can’t stand to be around sickness”

Giving that extra help and care isn’t easy. 2.6 million

Australians have a caring role - and a third of them are

severely depressed.2 Carers have worse health outcomes

than nearly any other group. Increasingly, we look to

professional carers to supplement, and in some cases, take

over caring roles. With more families living far apart, more

divorced and blended families, and more older people living

alone than ever before, demand for professional care is rising.

By 2042, aged care services are estimated to cost the state

106.8 billion dollars.3

Daphne

Dudley

How to read this report

Start wide

Focus in

Go wide again

Introduction: That’s where you are right now. It sets the big picture: What this project aims to achieve, who made it, what we stand for and how

we work.

Stories: We zoom in and profile a selection of ten of the 130 people in caring roles and relationships we met in

Salisbury and Unley, South Australia.

Patterns: After the profiles, we identify the reoccurring themes and answer the

questions: How do people in caring roles and relationships define great living?

Who is experiencing great living? What can we learn from these

positive examples that could be applied more broadly?

Opportunities: We set out 7 opportunities to enable more

people to experience great living.

Why Invest? Then, we look at the economic opportunities and moral imperative for pursuing

the 7 opportunities.

What’s next: The next phase of the project is to spend time co-designing with people, practioners and policymakers.

To move from conceptual opportunities to desirable solutions.

04 Working Backwards

05 Finding & meeting

06 Conversations & observations

08 The Salisbury & Unley 40

10 The eligibility lens

11 The connections lens

14 Barbara

16 Suzie

18 Thia, Mick & Soula

20 Dudley & Daphne

22 Leon

24 Mike & Liz

26 What is great living?

30 Great living behaviours

32 Moving towards great living

36 Opportunities for great living

39 Shaping minds

40 Rebalancing relationships

41 Activating family & friends 42 Starting relationships

43 (Re)Starting networks

44 Caring services

45 Diversify help networks

46 Economic opportunities

48 The moral imperative

52 Learning and working

53 The Working Backwards approach

54 Finding people

56 Talking with people

58 Service shadowing

60 Reflections from people we met

61 More about the people we met

66 Reflections from the team

68 International examples

72 What we read

74 Bibliography

76 Glossary

77 Contributors

79 We love feedback!

Introduction Stories Patterns Opportunities Why Invest?

Appendix

PAGE 5PAGE 4

We’re not a think tank and this report isn’t a provocative think

piece, it’s the first step in a year long process. We work with

people to co-design, prototype, and spread new solutions to

complex social challenges. We’re The Australian Centre for

Social Innovation’s Radical Redesign Team. We define solutions

as programs, platforms, networks, or principles that change

behaviours and shift outcomes. We believe the best solutions

come from people, and draw on their time, skills, experiences,

motivations, and aspirations. That’s why we Work Backwards

from people to policy. In 7 phases.

Projects begin by naming a tough social challenge, bringing

together governmental and non-governmental partners, and

assembling an interdisciplinary project team. We call this the

Get Ready phase.

This project began with the challenge: as our population

ages, how can we improve outcomes for older people in

caring roles and relationships? The project brings together

South Australia’s Office of the Ageing, the cities of Salisbury

and Unley, and two not-for-profit service providers - Helping

Hand Aged Care and ACH Group. Our project team includes a

secondee from the city of Salisbury, two interaction designers,

a graphic designer, an educator, a business analyst and a

community organiser.

In the Look and Listen phase, we spend time with people

to understand what a good outcome is, and the behaviours

that contribute to those outcomes. Our goal is to identify

opportunities for enabling more people to experience great

living. Over the past 2 months, we’ve spent time with 40

people in caring roles and relationships. Husbands, wives,

daughters, sons-in-law, grandchildren, and friends.

In the pages that follow we’ll share their stories, their versions

of great living, and what their day-to-day life actually looks

like. We’ll also introduce you to 7 opportunities for shifting

behaviours and enabling more people to experience great

living. In the Create phase we’ll go back out to people’s

kitchens and living rooms to build on the opportunity areas.

We’ll take our ideas out of the conceptual space and into the

tangible.

Working BackwardsWe’re a group of designers, social scientists, community developers and business analysts who co-design new solutions to tough social challenges.

In the Prototype Interactions phase, we’ll move from the

tangible to the practical - testing and iterating our ideas at a

small scale. In the Prototype Systems phase, we develop and

test out the back-end systems and procedures required to run

the emergent solutions. And we work with policymakers to

influence the broader policy context.

In the Value phase, we craft the business case and tell the

story of the solutions. In the Grow phase, we look to scale and

spread the solutions. Success for us are solutions that change

how people and systems behave, at scale.

This isn’t the first time we’ve Worked Backwards. In 2010, we

worked with 100 South Australian families to co-design a new

response to family stress called Family by Family. Now in

2012 Family by Family is now growing to two areas.

Introduction

New opportunties

Potential solutions

During the Look and Listen phase we searched for people on the streets of Unley and Salisbury, at supermarkets, in centres, cafes, libraries, and homes.

Finding & meeting

“Do you know of anyone who helps out or cares for a family

member, friend, or neighbour?” We met 130 people who cared

- through door knocking, at pharmacies, shopping centres and

supermarkets.

Most did not identify with the word ‘carer.’ Some wanted to

share the challenges - the anxiety, dependency, and sleep

deprivation. Others wanted to share the rewards - care as a

proud source of identity, a reinforcement of character, and a

continuation of family tradition.

We moved beyond street conversations to more in-depth

explorations with a 40 of these folks, stepping inside their

homes, accompanying them on errands and just hanging out

and observing. We spent time with people who were isolated

and alone, in close knit couples, with friends and in larger

networks.

Peoples’ experiences ran the full spectrum - from depression

and hand-to-mouth survival to optimism and thriving. We

developed tools to uncover hopes and fears. It was often

the little things (the photo on the mantle, the magnet on the

fridge, the book by the bedside) that revealed the most. That

dug beneath stoic facades, and unearthed worries about

death, forgotten ambitions, and dormant interests in activities

like cupcake decorating and bushwalking.

From top left: Door knocking, Parrahills Woolworths, Crossroads Woolworths, Goodwood Road, Jack Young Centre Salisbury

PAGE 7PAGE 6

Tea & Cake | First Visit Interaction

Topic Guide & Script - Caring Relationship

_________________________________________________________________

What are our opportunities?

RoutinesWe’re interested in people’s everyday routines and rituals

Stresses

Networks, Connections and Services

We’re interested in understanding the types of networks and services that people in caring

relationships rely on to make things work. Do friends provide more support than families? Do they

have a particularly strong neighbourhood network where everyone keeps an eye out for each

other - what are some of the interesting relationships?. Or do they not have a network at all, and is

this a good or bad thing? Exploring “happy” and “sad” networks will allow us to see how we can

build and support what already exists and also figure out how people who have no current

network can begin to build one around them. We want to understand what are the existing people

resources out there we might draw on, and what are some of the existing interaction out there we

might improve or build on.

Interests and Capabilities

We’re interested in discovering what people are interested in doing and where they get and

maintain motivation. We’re curious about why some people give up their interests, while others

keep going or building them. In particular we want to understand if there’s a gap between

people’s perception of their capabilities and the reality. We also want to map changing

capabilities, interests and ability levels over time to see patterns of change, and be able to

understand if people adjust their aspirations to match their perceived levels of capability. We are

thinking about capabilities in a broad sense - physical, mental, social and emotional capabilities.

We might hang solutions from here ...

Outlook and Aspirations

Understanding the gaps | discrepancies between ... | what is doing well for you?

We want to learn more about how people see themselves, how their outlook impacts their

wellbeing, what influences this, and what motivates them, what are people’s goals, aspirations or

versions of a good life, and how have they shifted or adapted over time. We also want to find out

what people want in their lives, their values, what they do well, and what’s missing.

Changes, Transitions and Directions

We’d like to understand the key moments when things change in people’s lives and the coping

strategies they have. What are the life skills and resources which help people reach the other

side? How do people plan, make decisions and learn from previous experience of pivotal times?

How do people change and adapt in altering circumstances? The event that preceded/caused

change is important but we are more interested in the journey through the period of change. Is

there something about people’s attitudes to change that influences how they deal with it? (fear,

excited apprehensive, wishing for change?) ... what happens at different life stages?

Things to think about BEFORE the meeting

IDentify lead person (drive structure of conversation and focus on carer)

ID support (focus on cared for and keep an eye on time)

Conversations & observationsWe developed a set of tools that helped guide and deepen our conversations and observations. We wanted to understand people’s day-to-day lives and what great living meant to them.

The starting point for our questions came from diving into the

literature and identifying frameworks we wanted to test and

explore. And because we start with people, we also drew on what

we learned whilst recruiting on the streets of Salisbury and Unley.

These insights informed our topic guides.

Over the course of a month we talked to people in a range of

ways and settings. Structured interviews in homes and cafes. Day

long ethnographies at the shops, at the caravan park or in front

of the TV. Sharing a cuppa, shortbread or lingering over Sunday

lunch.

We conducted structured interviews

using a detailed topic guide inspired by

research and recruitment conversations.

Visual tools made conversations about

big or abstract ideas- like great living

and outlook- richer and more concrete.

During ethnographies, we used a more

general topic guide that focussed on

observation of people, behaviour and

environment.

Introduction

Ethnography Tips

•What do they do?•When?

•Variety?

•Planning?

•Together/alone?•Decisions?

•Who’s around? •Groups? Neighbors? •Objects?

•Roles?

•Spirit of interactions?•Services?

•Media/calls/books

•What type of care?•Indep vs need help? •Roles?

•Spirit of give and take? •Communication?

•Money?

•Home environment? •Energy levels?•What energizes/drains?

•Language talking about past/present/future

•Goals? Wishes?•Carer/caree differences?

•Who or what brightens their day?

•What’s prioritized?•Emotions?

Note: Contradictions - Repetitions - Gaps - Hooks

PROBING THE LITERATURE

47% of people rely solely on their family

for day-to-day care5—care that is

valued at up to 40 billion dollars a year.6

Research told us that family plays a

critical role in caring situations, so we

focused part of our interviews on the

topic of family to find out more.

The absence of family stood out to us.

We expected geography to be a big

reason why families played a limited

role in peoples’ caring networks

and lives. Instead it was divorce,

fractured relationships, and complete

estrangement that weakened family

ties. Far from being a resource, family

was too often a deficit seen as being

past repair: “My children disowned me...

I haven’t seen my granddaughter for 11

years.”

EXPLORING EMOTIONS In interviews and ethnography we

weren’t only exploring what people did,

we were also listening for the outlook

and emotions behind what people did.

For example, fear.

Fear was an undercurrent in nearly

every conversation. People’s view of the

future was often clouded by a sense of

impending loss: loss of loved ones, loss

of brain power, loss of independence,

loss of control over how one died.

Ending up in a residential care facility

was uniformly frightening.

Fear manifested differently. For some it

led to denial and resignation. “I wouldn’t

want to even think about needing

more care.” For others, fear became

a motivator to live differently. “We’re

just going to have to start living in the

present. Now is as good a time as any.”

For others, fear was mere background

noise. Something that was there, but

didn’t need to be listened to or acted

upon.

IDENTIFYING STRATEGIES

Being in people’s homes and asking

open questions about lives, not just

services, enabled to us to uncover the

strategies people use day-to-day to get

to great living.

By hanging out, we learnt so much

about how people adapt to live well with

dependency. How to have a romantic

date in a hospital cubical. How to turn

meal services into a gastronomic

experience. How to volunteer from

home. How to fix trailers without being

able to see. How to make sex a daily

activity.

It’s unpacking these strategies and the

attitudes and perceptions behind them

that ultimately led us to identifying great

living and what it will take to get more

people on the track.

1. Productivity Commission, 2011, Caring for Older Australians, Report No.

53, Final Inquiry Report, Canberra, p. 9.

2. McGrath, D. 2011, ‘Carer support is not only about Respite.’ Presentation

to Transforming Respite Summit, Morphettville, SA.

3. Commonwealth Department of Health and Ageing, 2003, Review of

PAGE 9PAGE 8

The Salisbury & Unley 40

Introduction

Thanks to: Eleanor / Barbara / Soula, Mick and Thia / Muriel and Norm / Deirdre and Jean / Joan and Don / Dudley and Daphne

Lance and Meredith / Eddie and Pam / Eileen / Glad / Helen and Jayne / Bob and Jean / Julie / Karen and Lou

Leon / Manajeh / Eddy / Mike and Liz / Joyce / Beryl and Jon / Suzie

PAGE 11PAGE 10

5 10 15 20 25 30

5 10 15 20 25 30 35 40

The eligibility lensMost ‘aged care’ services focus on individuals, determining eligibility by age, health and care needs.

LEVEL OF CARE

High Care

Mid Care

Low Care

= Struggling

= Getting by

= Great Living

AGE

THE 41 PEOPLE WE MET

THE 27 CARED FOR PEOPLE WE MET

Under 65

Carers

Over 65

Cared for

CULTURALLY & LINGUISTICALLY DIVERSE

CALD

Not CALD

TYPE OF SUPPORT

Managing Alone

Manages with Care

TYPE OF CARE

Mostly physical

Mostly cognitive

Mostly emotional

GENDER

Male

Female

Introduction

In their map we can see that Mick, Soula and Thia have limited support from their extended family, the broader community or from services.

In their map we can see Mike and Liz have multiple connections that all contribute strongly to great living.

The connections lensWe found it more instructive to look beyond the individual to who was around the individual. The type and quality of people’s connections told us more about great living than their age, health or care needs.

Fam

ily

Community

Services Fam

ily

Community

Services

Barbara Mick, Soula & Thia Mike & Liz

Fam

ily

Community

Services

In Barbara’s map we see family are only present at the network level and the only relationship she has is with services. Her limited connections weakly contribute to great living.

Knowing Liz needs help to dress and

remember faces doesn’t tell us why she

is living well.

Knowing Barbara has physical needs

doesn’t tell us how engaged members

of her family are in her day-to-day life.

Knowing Mick and Soula are classified

as CALD isn’t as telling as the fact they

manage care for Thia alone.

The ‘Connections Map’ used in this report shows the makeup

of an individual’s connections and how strongly they contribute

to great living:

Familyconnections

Communityconnections

Strong

Servicesconnections

Weak None

Reationships level connections

Network level connections

You can read more about how we define great living in ‘Patterns’ p. 26-35.

Barbara Thia LizMick

& S

oula

Mik

e

PAGE 13PAGE 12Stories:10 people we met

Suzie

Barbara

Leon

Thank you to our wonderful collaborators - Leon, Mike & Liz, Suzie, Mick, Soula, Thia, Dudley, Daphne and Barbara - who gave their time and permission for us to share their stories with you.

Mick, Soula & Thia

Dudley & Daphne

Mike & Liz

PAGE 15PAGE 14 Stories

A BIT ABOUT HERBarbara is a proud Scot living in Salisbury. She celebrates

Burns Night every year with a Tartan display in her backyard

and dreams of the rolling hills of St. Andrews.

She’s 75 years old and lives in a one-bedroom council flat

with her two pet budgies. Barbara suffers from lung cancer

but smokes half a pack a day: “The more I worry, the more

I smoke. I’d rather spend money on food, but I’m buying my

cigarettes. If I cannae sleep during the night, I smoke.” She has

diabetes, but still loves her ginger beer and short bread.

She moved to Australia 30 years ago with her husband “for a

fresh start” after he had several affairs. This didn’t work out,

and they separated a decade ago. Since then, her husband

died and her kids haven’t been in contact with her.

On days she’s well enough to get out of bed she cooks, reads

fiction books or calls relatives in Scotland. Her nephew, a

cab driver, stops by some days for a cigarette. Other than

the cleaner from the state provided Domiciliary Care, her

neighbour Diana is her only regular contact every few days.

HOW SHE SAYS SHE’S DOINGBarbara lives from one pension day to the next. Her health

is deteriorating with heart, lung and stomach conditions. She

says she can’t quit some of her habits - smoking and eating

sweets daily with diabetes. Her health also fluctuates a lot -

from being up and full of energy to bed bound within an hour.

She needs pain killers, insulin and 10 different tablets each

morning. Despite this, she likes a good laugh.

WHAT GREAT LIVING LOOKS LIKEBarbara says she’d like to re-establish connections with her

children, who she hasn’t seen since her divorce 10 years ago,

but that this is hard: “My children disowned me... I haven’t seen

my grand daughter for 11 years.” She’d also like to be more

mobile and meet new people.

She gets pleasure from talking and sharing memories with

others over the phone, like her cousin Rosy in Scotland. She

likes baking shortbread and other treats to share with people.

At the shops she bought small gifts for the children of people

who visit her, even though finances are tight. She cancelled

seeing anyone at Christmas, as she’s ashamed she can’t

afford gifts.

HER DAY TO DAYBarbara spends most of her days at home except for the

shopping trip for groceries with neighbour Diana or for

doctor’s appointments. She sometimes walks over to Diana’s

for a chat or to give Diana cooked chicken bones for her dog.

Other days she leaves the flat only to water the garden or

check the mail box.

If she is well enough to sit up in bed, or be in her living room,

she reads novels for a short while until her eyes need a break.

She also spends time with her budgies teaching them new

cheeky words.

Her cleaner comes every fortnight. Barbara enjoys the

short chats they have. She thinks the cleaner could be more

thorough though: “She spends time cleaning where it’s already

clean, like in the bathroom, and cleans the kitchen floor with

water, not detergent.”

Barbara gets frozen meals delivered from the City of

Salisbury’s Jack Young Centre every second Monday. She has

a chat with staff at the centre to order the meals and reheats

them in her kitchen at lunch time. Barbara goes shopping with

her neighbour Diana about once every fortnight. In return she

cooks chicken bones for Diana’s dog.

Barbara“It’s not a life this, it’s not a life. I thinks that’s why I shut people out.”

CONNECTIONS MAP

Fam

ily

Community

Getting by Great Living

Services

Network R.ship

Barbara

PAGE 17PAGE 16 Stories

A BIT ABOUT HERSuzie is not quite sure how old she is. She thinks she’s 52.

She is a member of the Stolen Generation and doesn’t have

contact with her biological family. Her adoptive mother lives

in a nursing home. At the moment she doesn’t see a lot of her

because of a train line upgrade.

In 2002, Suzie underwent brain surgery to remove a

tumour, leaving her with severe disabilities. She talks

about experiencing paranoia, hallucinations and periods of

depression. Left blind in one eye and deaf in one ear, she

walks with a limp and tires easily. When she’s tired everything

gets hard: moving, talking, thinking.

Prior to her tumour Suzie worked out bush, cooking in

roadhouses. She went caving, played computer games and

enjoyed photography and painting. Nowadays Suzie spends

a lot of time alone watching horror movies, reading and

drinking. She volunteers a few times a week at an Indigenous

arts centre, and has a cleaner and a care worker.

HOW SHE SAYS SHE’S DOINGWhen we asked if there were any points in her week where

she would like things to be different Suzie replied, “Yeah, all

of it.” Since her brain injury Suzie has had a found it tough to

keep doing the activities she loves. For example, she used to

spend a lot of time in the bush and doing outdoor activities;

this has been replaced by watching movies. She says not

being able to go out bushwalking “scares the hell out of [me].”

Suzie wants to keep learning and developing her skills. She

says, “The day you stop learning is the day you die.” Suzie tells

us she has a history of drinking, and last weekend she drank

half a bottle of scotch on her own. While she likes time alone,

a magnet on her fridge reads, “I cannot be lonely if I like the

person I’m alone with”. She takes medication for depression,

but says the “depression tablets aren’t working... I’ve been on

them for 7 years and that’s a long time to be on one tablet. I

have to be on them for the rest of my life”.

WHAT GOOD LIVING LOOKS LIKESuzie is not really happy with how things are going in her

life; she is not doing many of the activities she enjoys. Her

networks are limited and are mainly service providers. She

tells us that she wants to be able to do things on her own:

“I’ve always been independent; I want to stay as long as I

can.” Good food is important to Suzie: “My perfect meal is

lobster. I have had kangaroo. I have had shark. Being out in

the bush, I’ve had abalone.” Now her staple is tinned tuna and

mayonnaise bought every two weeks at Woolies. She has

started acupuncture treatment to help her stop smoking and

drinking.

HER DAY TO DAYAs well as time alone at home, Suzie works as a volunteer at

a local Indigenous art centre where she answers the phones

and does general office work. Suzie has met some friends

there. Occasionally she has lunch at the City of Salisbury’s

Jack Young Centre but usually only when her carer comes

along. She says: “I don’t go much - I should go more often.”

Suzie’s basic needs are mostly provided for through

professional care services. A carer visits for two hours a week

to help with shopping and organising doctors appointments.

Suzie trusts her because “she knows when I start getting

stressed - and I do get stressed.” She also has a cleaner that

comes fortnightly.

Suzie“A lot goes on in your head when you go through something traumatic” Getting by Great Living

Fam

ily

Community

Services

Network R.ship

Suzie

CONNECTIONS MAP

PAGE 19PAGE 18 Stories

A BIT ABOUT THEMSoula and husband Mick care for Soula’s mother Thia (90),

who lives with them. Thia was born in Greece, and Greek

culture remains a pillar of the family’s day-to-day life. She

speaks little english. Soula and Mick have 3 kids who they

see for lunch on the weekends. Their fourth daughter lives

in Greece with their only grandson. They have never been to

Greece themselves.

Mick had a workplace accident in the late 80’s, and hasn’t

been able to work since. Soula works full time at a call

centre. She sees looking after her mum as her responsibility:

“If I don’t do it, who will? She’s my mother.” Mick and Soula

live on Soula’s wage and Mick’s disability pension. They cook

for Thia, take her to medical appointments, help her take a

bathe and try not to ever leave her alone, “even to go to the

shops.”

HOW THEY SAY THEY’RE DOINGMick and Soula are doing their best to make things work,

balancing the care of Thia between them. They’ve adapted

to Thia’s changing needs by bringing her to live with them

after her husband passed away. They don’t get any support

in looking after Thia: their children drop in for a meal, but

aren’t involved in Thia’s care. They tried using a Greek respite

service, but Thia didn’t like being left with people she didn’t

know. During the week, Mick and Thia don’t leave the house

because Thia finds it hard to get around. Mick and Soula don’t

have much time for themselves, but feel “There’s nothing we

can do, we’re just going down the direction with her now.”

WHAT GOOD LIVING LOOKS LIKEWhen we asked Mick and Soula about what they’d like to

be doing more of, they said they’d love to have some time

alone as a couple. The last holiday they had was four years

ago, and they’ve given up their weekly trips to the movies

together so Thia isn’t left alone. Spending time with their

extended family is something they used to do more of, but

it’s dropped off since they’ve been caring for Thia.

Mick would like to be in better health. Soula tells us that she

worries: “What if Mick gets sick and I have to stop and look

after them both?” Mick would like to feel like he did when he

was working; he says that back then he was his “own man”.

Now he asks himself: “What would I be doing if I wasn’t

looking after the old girl?” Via a translator Thia told us good

living for her means, “Being with my kids and being looked

after. And doing whatever they do.”

THEIR DAY TO DAYThere is a gap between Mick, Soula and Thia’s current

behaviours and their aspirations. Mick cares for Thia during

work hours Monday to Friday. They mainly watch television -

watching the wrestling together is their favourite - and Mick

prepares Greek food or looks after his fruit trees. Mick and

Thia often share a laugh about their small dog who likes to sit

on Thia’s lap.

When she gets home from work, Soula takes over looking

after Thia. Mick then generally eats dinner and spends the

evening in another room. Soula also looks after Thia on the

weekends, while Mick and his son “go for a long drive or to

Harvey Norman.” On Saturdays, Soula and her Mum spend

the day at Thia’s old house in inner city Adelaide. During the

week, Thia’s house isn’t used. Soula tells us that one of Thia’s

childhood friends “lives a street away but they never see each

other” as it’s hard for Thia to climb stairs.

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A BIT ABOUT THEMDudley and Daphne have been together for over 70 years.

They met in the final year of high school and worked together

for many years in rural South Australia, doing everything

together, from wood cutting to mechanics.

Dudley and Daphne have led very active lives. Just 10 years

ago, Dudley was famed internationally as Australia’s oldest

racing car driver, and Daphne was his one woman pit crew for

over 50 years at races across the country. Now Daphne finds it

hard to even get around in the house because of chronic pains

in her lower abdomen and knee surgery prevents her from

walking far. Dudley had open heart surgery three years ago

and feels like he’s lost all his energy. Dudley plays a big part

in looking after Daphne, and says he’s a “bloody doctor... I test

her blood pressure, give her shots.”

They used to like to hit the road and travel across Australia

together. Now Daphne doesn’t make any plans since she

“doesn’t know if [she]’ll be dead tomorrow.” Some days Dudley

tells us he wishes his wife would “die to put her out of her

misery”. His biggest fear is dying first.

HOW THEY SAY THEY’RE DOINGWhilst Dudley and Daphne’s basic needs are being met with

Dudley’s support and formal services, there are still lots of

things they’d like more of in their lives. Their support network

is getting smaller: “We’ve outlived our friends and enemies”.

They have 3 children living close by, but they don’t see them

much. They’d like to have more fun, and not let their health

limit their enjoyment of life. It’s been hard for them to pursue

their interests—like car racing—given their current situation.

WHAT GOOD LIVING LOOKS LIKEDudley would like to have more energy to do things. He tells

us: “I want to get around again.” Dudley liked being recognised

as an expert in his motor racing days ( “They called me the

Legend, Deadly Dud”), and would like a chance to share his

skills again. Daphne would like to do and learn more: “I used

to do cake decorating, I am still interested.” She says that when

volunteers from the local community centre drop by, she’d like

it if they did activities together, but “they just sit and talk.”

As a couple, there are also lots of things Dudley and Daphne

would like more of. When talking about intimacy they say,

“Sex. Let’s just say we’d like it.” Both Dudley and Daphne

talk about wanting to meet people to share intelligent

conversation, new experiences, and to have a good laugh

with. They’d like to see more of their children, but tell us

that their kids “can’t stand sickness.” Daphne tells us “being

respected would sure be nice. But you can’t be respected if

you can’t enjoy life.”

THEIR DAY TO DAYA care worker, provided by a not-for-profit service provider,

comes in every morning to shower Daphne and help her get

dressed. Dudley gives Daphne her medication and morphine

shots throughout the day. She spends most of the day in the

living room, but doesn’t watch TV as “there’s not much on.”

Sometimes a care worker pops by in the afternoon to spend

an hour with Daphne, but she says, “there’s nothing to talk

about.” Their grandson pops in every afternoon—they pay him

$100 a week to provide them with meals.

Dudley is still an avid driver (he owns three cars), yet they go

few places. Once a week or so, they go the community centre

for a meal but Dudley complains that “there’s no intelligent

conversation there, no laughter.”

Dudley & Daphne“I want to get around again”

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A BIT ABOUT HIMLeon is the kind of man you would turn to if you needed help.

Ask him a question or where to find something and he’ll offer

to “put [his] feelers out.” He has lived alone in a SA Housing

Trust house in Salisbury North since his wife died from

cancer in 2006. When this happened, Leon went into a deep

depression and his eyesight deteriorated rapidly. He now only

sees light and dark, and is effectively blind.

Leon is a joker, and has a broad network of people with whom

he can share a laugh. He keeps in contact with people over

the phone, catches up with them at social gatherings, and

over mutual interests like fixing trailers in his workshop and

sourcing bits and pieces for people’s homes.

HOW HE SAYS HE’S DOINGAs a friend to many, Leon fixes trailers and repairs things for

people he knows. He describes his home as a “distribution

centre.” His network has grown since his wife passed

away, taking part in events at the Country Music Club and

in the Gawler Low Vision Support Group. Leon has several

people on speed dial who he calls daily. He is close with his

neighbour, and goes next door every morning for “comedy

hour” and shared banter. He says “I can’t complain at all—I’ve

got friends I can share a laugh with.” His motto is “caring and

sharing” and says “I scratch your back, you scratch mine.”

He uses his talents of sourcing and fixing things for people

and they help him in return with meals and lifts. He has

adapted his interests and skills to his sight loss, and makes

use of both formal services and his own network of friends.

WHAT GOOD LIVING LOOKS LIKE“I hope one day she’ll park her shoes under my bed”. Leon

tells us he’s recently met a woman, but is taking things slowly.

Being independent is important to Leon: “I don’t want to be

a burden to anyone.” Leon places items in his house, like his

kitchen wares and tools in exactly the same spot so he is able

to manage his day-to-day activities himself. Sharing stories

with friends is really important to Leon, and he is a colourful

story teller. He had a son with his first wife, who now only

occasionally comes around, but Leon doesn’t dwell so much

on people missing from his life.

HIS DAY TO DAYLeon keeps very busy. When we spent time with him, trailers

of different sizes were parked on the front lawn along with a

wide variety of scrap metals, wood and even an old washing

machine for his fixing, sourcing and making projects.

He is also busy thinking up and preparing pranks for the next

time he sees a particular friend. Things like a collection of

paddle pop sticks for the one friend who believes he’s up “shit

creek without a paddle”, or sourcing a box of vegemite chips

to give the committee members at the country music club a

very special Aussie Christmas—tongue firmly in cheek.

Leon receives food from the City of Salisbury’s Jack Young

Centre meal service topped up by meals that friends bring

him. A cleaner from Community Support Inc. also comes by

once a fortnight.

Neighbours drop by each day to catch up with groceries in

tow, to share the latest stories, or just to fix together that

barbeque. Friends come over to stay at his place or take Leon

to theirs for a day or the weekend.

When asked how he does all of this minus his eye sight, he

shrugs and says: “You can do anything you want, you’re only

limited by your own imagination. You need to broaden your

outlook on life.”

Leon‘Great friends and company around me, I can’t complain at all” Getting by Great Living

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Mike & Liz

A BIT ABOUT THEMMike and Liz met 23 years ago and have been inseparable

since. Together, they’ve enjoyed adventures like scuba diving,

flying planes and travel to the more personal: celebrating the

birth of grand children, renovating and gardening.

Theirs is a home with systems in place - a notice board

bursting with photos to aide memory, and space for Liz’s

wheelchair - a result of her 31 years with multiple sclerosis.

They tackle the progressive decline in capabilities MS brings

using some effective strategies.

Tricks like pooling strengths to work together, where Liz is

the planner, and Mike makes it happen. It’s also important to

them to find ways to give back: getting to know neighbours,

volunteering, and even setting up a community bank.

HOW THEY SAY THEY’RE DOINGDespite tough times (losing family, Mike’s cancer, Liz’s near

death), they describe themselves as “glass half full people”

and much of their focus is geared towards the brighter side

of life - appreciating the time they are together, doing things

that challenge them, and building new friendships. A weekly

highlight is rehearsing with the recently formed caring choir,

where they find “bonds of affection and mutual support.”

They’ve learnt to navigate complex bureaucratic systems,

and have even shaped services to better fit them. Sometimes

it’s fighting against discrimination (such as lack of choice and

disabled access) - “it’s the squeaky wheel that gets the oil.”

Other times, it’s refusing to accept services until they work as

they envision - insisting that respite be something for the two

of them, rather than a break away from each other. Mike says,

“I don’t want respite away from Liz I wanna be with Liz... if we

have respite we’ll have it together.”

WHAT GOOD LIVING LOOKS LIKELiz’s wish is for a “happy old age.” She would like to see

her grandchildren more than the every fortnight as it is

now. Mike thinks it’s important to have “someone to love,

something worthwhile, and something to look forward to”.

He occasionally misses the buzz that work gave him and his

loss of fitness due to his cancer, but he’s doing a few freelance

projects, and the cancer has helped them live in the moment.

That said they do plan for the future and have a plan in place

with a close friend should anything happen to either of them.

THEIR DAY TO DAYBeing close is very important to Mike and Liz and they start

each day with a two hour ‘love-in’ - for intimacy, planning the

day, newspapers and drinking coffee in bed. Three times a

week, a carer, provided by Domiciliary Care, visits and helps

get Liz showered and dressed. One of these is regular carer

Mary, who goes with Liz to the Central Market to shop for

their weekly ‘cooking experience’ where they produce dishes

from different cultures together—Liz does all the chopping,

Mary does the mixing.

Mornings often involve an exercise class for Liz, and Mike

will get on with work in the home, or goes on his regular

second-hand book hunt. Liz will take a nap every afternoon

“to give the neurons a chance to switch off”, and they also fit

in their weekly choir practice. Friends often pop round - like

Bronny, who they met through her mowing service, and have

developed a friendship with over the years. Most weekends

involve visits or outings to family and friends, or a creative

project—Liz has just finished painting mugs as presents for

the grandchildren.

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Patterns:What is great living?

Barbara, Suzie, Dudley, Daphne, Soula, Mick, Thia and most of the other people we met are getting by. They have their basic needs met: they have food, a roof over their head, access to health care, and professional carers who help with shopping and cleaning. They are getting by in spite of brain tumours, diabetes, MS, dementia, and cancer.

Only a handful of people we met were close to great living - people like Leon, Mike and Liz. That left us wondering: What’s different about the people who are experiencing great living? How could we help more people lead great lives?

These are the questions we set out to answer as we looked for patterns across the 40 stories we heard. First, we compiled people’s definitions of great living. Then, we analysed what people actually did - in other words, how they behaved - to move towards great living. Finally, we identified what enabled people to adopt those behaviours: the mindsets, relationships, and networks that seem to support great living.

Here’s what we discovered.

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Q: What do people say is great living? A: Personal development, close connections, compelling experiences, and not being held back.

Patterns

Dudley wants intelligent conversation. Daphne wants to feel respected. Suzie wants to eat lobster and kangaroo, from her days out in bush. Barbara wants financial security, and to not have to worry about paying for her funeral. Liz wants to keep learning new things. Mike wants to be surrounded by driven, passionate people. Mick and Soula want to travel interstate. Leon wants to build new relationships. Thia wants to never be alone.

The ‘living great’ cards in action

When we asked people to sort through our ‘living great’ cards

and assemble their version of great living, we got a real range

of responses. Not surprising, really. People in caring roles and

relationships are about as diverse as they come.

We wondered what great living meant as people’s roles

and relationships shifted over time. The literature on great

living—on wellbeing, to be more precise—talks a lot about

independence and control.* These aren’t static concepts—as

our capabilities change, so too does our independence and

control.

What does great living mean when we are no longer as

independent as we once were, and rely on others to get by?

What does great living mean when our relationships require

more of us than they once did?

GREAT LIVING IS TANGIBLEWe learned was that people’s versions of great living were

rooted in past experiences . They weren’t extravagant or

fantastical. Dudley values intelligent conversation because

he’s always been a witty conversationalist. Suzie sees the

great living as good food because she’s savored it before.

People weren’t downgrading their aspirations based on their

caring needs and responsibilities - but they were downgrading

their sense of possibility. For Daphne, great living was about

feeling respected. Respect wasn’t a fuzzy concept for her:

it meant people seeing you, not your ailments. Yet Daphne

saw respect as completely out of reach, something no longer

possible given her ailments.

Great living, even where it felt out of reach, was tangible. It

was made up of at least four component parts, which people

sequenced and prioritised differently. Some people saw

great living as all about personal development; other people

saw great living as a blend between close connections and

compelling experiences; still other people saw great living as

not being held back.

* Valliant (2002) and Burgener

(2005), amongst others, informed

our thinking about great living.

To see what we read head to page 72.

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Q: What behaviours underpin great living?A: Exchanging, adapting, shaping, enjoying, initiating.

Whilst few people we met wanted any less for themselves because of their caring situation, many are living with less. Barbara’s diabetes is worsening; she rarely gets out of the house. Daphne has debilitating stomach pain; Dudley spends most of his day at Daphne’s side. Eileen was recently diagnosed with emphysema; most of her week is spent alone, reading postings and playing games on Facebook.

The gap between people’s aspirations and their behaviours is wide. By behaviours, we mean what people do, say, think, and feel on a day-to-day basis.

People moving towards their versions of great living do, say, and think some similar things. They may have different versions of great living and different capabilities, but they have adopted a common set of behaviours.

Patterns

Top: Leon and his friends eating Alison’s lamb stew.

Bottom: Liz and one of her ESL students.

GREAT LIVING BEHAVIOURS The individuals we met close to their version of great living:

• Exchange: Swap stories, skills, resources, and different

kinds of care.*

• Adapt: Continually (re)shape how they live and what they

do, measuring success in terms of what they can do†

• Shape: Explore potential futures, plan forward, shape

expectations and systems to work for them.

• Enjoy: Infuse fun, enjoyment, and humour into most

everything they do; Don’t see health as a prerequisite of

happiness.

• Initiate: Actively seek out new people and places.

Mike and Liz’s version of great living is constant learning,

being in stimulating environments with passionate people,

and having a close relationship with each other. Liz is losing

muscle control, and yet she’s still taking on new projects,

learning to cook new recipes and painting. Mike and Liz have

helped to initiate a carers choir and Liz tutors ESL students

at home, enabling them to constantly meet new and different

people.

Leon’s version of great living is about reciprocal friendships,

fixing trailers, and building new connections. Far from being

an obstacle, Leon’s blindness has brought new meaning to

the notion of reciprocity. He still fixes trailers. He tells lots

of (off-colour) jokes. He laughs a lot. He’s open to meeting

friends of friends - and takes an interest in their interests. This

enables him to build new connections - including romantic

relationships.

People who are farther away from their versions of great

living also do, say, and think similar things. They too have

different versions of great living, and different capabilities, but

their behaviours aren’t facilitating great living.

THE INDIVIDUALS WE MET FARTHER AWAY FROM THEIR VERSION OF GREAT LIVING• Don’t think they have much to give.

• Stick with the familiar and convenient; measuring

success in terms of what they can no longer do.

• Fear a negative future; wait for it to happen.

• Make decisions according to what they see as

‘appropriate’; accept limitations of age and health.

• Avoid asking for or accepting help.

Barbara’s version of great living is financial security, closer

relationships with family, and travel to Scotland. Since her

divorce 10 years ago, Barbara hasn’t had any contact with

her 4 kids. She sees her diabetes and poor health as a barrier

to doing much. She eats lollies and shortbread in bed. She

hasn’t accepted her neighbour’s invitation to Christmas dinner.

Money is so tight she struggles to pay for subsided frozen

meals, but she’s not told anyone about her financial situation.

Dudley’s version of great living is about intelligent

conversation, competition and challenge, Daphne’s version

of great living is about being respected and doing projects

with Dudley. Until 8 years ago, Dudley was the world’s oldest

speedway racer. Daphne was his pit crew. Now, Daphne’s

unwell more days that she’s well. She sits in her special

chair and waits for the hours to pass. Dudley rides his bicycle

every morning, plays with his dog, reads a textbook about

prescription drugs, and occasionally watches videos of his

speedway days. A recently widowed neighbour comes by

most nights for company. There’s not much new to talk about.

RELATIONSHIPS INFLUENCE GREAT LIVINGDudley and Daphne’s behaviours are interlinked. What one

does, says, and feels affects the other. We found that for

people giving and receiving nearly full-time care from each

other, we needed to look at the distribution of behaviours

across the relationship. Dudley doesn’t go to the speedway

track because he thinks Daphne is too unwell. Daphne doesn’t

ask to do projects with Dudley because she thinks she is too

unwell. Neither is getting what they want: in fact, they seem

stuck in a self-perpetuating downward cycle. We met another

caring couple where the husband was “sacrificing” his great

living to try and keep his wife, suffering from dementia, at

home. They too are stuck in a self-perpetuating downward

cycle, where neither is getting any closer to great living. The

demands of caring has supplanted anything else.

* Fine’s (2004) work gave us

a lens to look at care relationships

more broadly.

† Freund’s (1998) selection,

optimisation and compensation

(SOC) framework influenced how we

thought about adaptation.

To see what we read head to page 72.

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What enables Mike, Liz, and Leon to adopt behaviours that get them closer to great living? Why haven’t the demands of caring supplanted everything else? The short answer seems to be balance. They’ve got a ‘knock-down, get-back-up’ attitude. They’ve got relationships that aren’t just about caring. They’ve got networks that both alleviate the pressures on their relationships and bring new energy and experiences into the fold. Individual mindsets, relationships, and networks are what appear to be critical.

Q: What enables people to adopt behaviours that move them towards great living? A: Mindsets, relationships, and networks.

OPEN MINDSETSMindset, attitude, personality, outlook, self-perception. Call it

what you will, but the people who are moving towards great

living are able to truly appreciate being alive - even whilst

acknowledging the indignities and setbacks of getting older

and needing care. They don’t live in denial. They live with an

understanding of what is happening to them and those around

them - but don’t see it as taking away from the essence of

them. Leon knows he is a funny and blindness won’t change

that, if anything it gives him new material.

In psychological words, the people doing really well seem

to have a strong sense of self. They know who they are, and

are secure enough with their own identity that they find ways

to keep expressing themselves even when circumstances

change. A change in circumstance isn’t something to be

feared, avoided, or succumbed to but just a new reality they

have to adjust to.

Patterns

Irene

MOTIVATIONAL RELATIONSHIPS Solid, trusting, comforting, active, fun. These were some

of the words people who were doing well used to describe

relationships that brought the best out of them. Relationships

that made them want to exchange stories, skills and

resources; focus on what they can still do; plan forward; do fun

things; and seek out new opportunities. Good relationships

seemed to motivate people to get on with living, as well as

help them to actually do that.

Good relationships weren’t just a ‘means’ to an individual’s

‘ends’, but an ‘end’ in and of themselves. Liz’s relationship

with Mike isn’t just helping Liz get by and live well, but

something she puts continual energy into. That’s also true

for another couple we met, Lou and Karen. When Lou was in

hospital receiving treatment for leukemia, Karen planned and

orchestrated a weekly date night- complete with table clothes,

candles, and non-hospital food. Lou even gently chided Karen

for not remembering his dress shoes.

VIBRANT NETWORKSAbundant and varied. That’s how we’d describe the networks

that surround the people living well. What separates networks

from relationships is the frequency with which people see

them - and the functions they perform. Individuals and groups

in a network might be connected to a particular interest (e.g.

sewing friends), or a particular time (e.g. friends from work),

or a particular need (e.g. plumbing, cooking).

Academics refer to networks with a range of individuals and

groups as ‘multiplex.’ That means there is some redundancy

built in - there are multiple people in the network that could

fulfill a function if needed. That also means there is task

distribution - and the tasks are not all about caring. Indeed, we

learned that having individuals & groups in the network who

don’t play a physical caring role helps people maintain their

interests and practice adaptive behaviours.

Take, Leon, for example. He’s got a cleaner and he gets meals

delivered every week - but he also has mates with whom he

repairs trailers, neighbours with whom he shares a good joke,

and community groups he visits to get out of the house. Were

some of his mates and neighbours to no longer be around,

Leon has other people in his network who could play similar

roles. We’d predict that Leon’s network could bounce back if

there were some changes and unpredicted shocks.

* To read more about Knoke

and Kuklinski’s (1982) concept of

multiplexity head to page 72.

Eddy Leon

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Open mindsets, motivational relationships and vibrant networks were common features across the people doing really well, though the makeup of their relationships and networks varied widely. Leon’s got mates, neighbours, and community groups. Mike and Liz have each other - as well as friends and a professional carer. For those doing well, friends, family, services and community groups take on a variety of roles. Over time, as capabilities shift, so too can the relationships and networks. People in the network layer can take on more intensive roles, and people in the relationship layer can distribute tasks to the network. This flexible mix of people helps to maintain great living.

Q: Who enables people to adopt behaviours that move them towards great living? A: A mix of friends and family, services, and community groups

FRIENDS & FAMILY MAKE AN EFFORTFor relationships to be motivational and networks to be

abundant, partners, parents, children, grandchildren, and

friends also have to do, say, think, and feel different things.

Partners who are in great relationships and networks keep

doing the things that make their relationship tick - whether

that’s going for drives, reading the newspaper, or having date

nights - even as capabilities shift. They also find ways to keep

the intimacy alive - whether that’s sex or just physical touch.

And they don’t shy away from the difficult conversations.

Parents and children who are in great relationships and

networks work hard to treat each other as adults. They are

mindful & respectful of boundaries, acknowledge and express

appreciation for what the other is doing.

Friends who are in great relationships and networks keep

up with each other regularly. They call to check-in, and are a

regular presence in each other’s lives even if they see each

other infrequently. They are also not afraid of sickness and

age. They can reminisce about the past, but also suggest

things to do together - be it watching a film, reading a book

aloud, cooking something, or going on an outing.

COMMUNITY GROUPS REACH OUTChoirs, country clubs, sewing circles, lawn bowls, bridge

groups, dancing groups, community centres, cancer support

groups. The people experiencing great living are plugged into

community organisations and groups that help them to keep

learning, stay active, and meet new people.

These are community organisations and groups that are

flexible and reach out to people. They don’t have a ‘Build it

and they will come’ mentality. Instead, they actively cultivate

new members and do everything they can to close logistical

gaps - even for the non-joiners and people who have said ‘no’

in the past. Every couple of weeks, Leon takes part in a group

suggested to him by the Royal Society for the Blind. They had

to work hard to sign him up. Now they pick him up, and head

to the Gawler Country Music Club Inc. for an afternoon of live

music. The people he’s met have become so close they throw

each other birthday parties, and see each other between

events. That stands in stark contrast to the speedway circuit

that Dudley and Daphne were a part of. Once they stopped

participating, the group stopped calling. They are disconnected

from their former network.

Patterns

SERVICES ARE DEVELOPMENTAL Carers, doctors, cleaners, and gardeners. Nearly everyone

we met interfaced with these services. For people far away

from their versions of great living, weekly visits with service

providers were their relationships and networks. For people

closer to their version of great living, service providers were

only one node on the network. Usage didn’t seem to be

the differentiating factor. It was the quality of those service

interactions.

Every other week, Inga spends two hours with Suzie helping

her restock her kitchen. They shop and put away cans of food

together. Inga is a professional carer whose salary is paid for

by the state and a welcome helper to Suzie when she’s there.

Many nights, Suzie just opens up a tin of tuna for dinner.

Every Friday, Mary spends the morning with Liz cooking food

from around the world. They plan, shop, chop, mix, pour,

simmer, and bake together. Mary is a professional carer,

whose salary is paid for by the state, but when in Liz’s kitchen,

she’s a creative sous chef.

Both Liz and Suzie have their essential food needs met.

But, for Liz, food isn’t merely a functional experience. It’s

a developmental experience. Shopping and cooking aren’t

chores to be ticked off a list, but opportunities to learn, build

new capabilities, and enjoy.

Nearly all of the services we heard about and saw were

good quality, functional experiences. Beryl and Jon really

like their cleaner. Barbara likes the driver who delivers her

frozen meals. Daphne likes the girls that keep her company.

In fact, older people’s services consistently receive customer

satisfaction rates of 95%!

But, satisfaction shouldn’t be the only marker of success. After

all, such statistics are based on people’s prior experiences

with services of those kind, rather than an understanding of the

kinds of services that could be. Few of the services we heard

about or saw were good quality, developmental experiences.

They weren’t building capabilities. If anything, many of these

services inadvertently took away people’s capabilities.

Dudley loves to garden, but he felt pressured to accept

gardening help in order to get more support for Daphne. Now,

he’s not gardening as much. Barbara watches Nigella Lawson

and enjoys making good Scottish food, but gets frozen meals

delivered to eat alone. It’s just easier. Then, there are people

who avoid services in order to maintain their skills. Another

person we met, Eddy, actively avoids going to the Citizens

Centre because he wants to keep up his cooking skills, and

not “get lazy”. When his wife was alive, she did all the cooking,

so Eddy’s asked his carer to teach him how to cook. Now

Eddy’s churning out cookies and cakes.

More than building skills, though, services could help build

relationships. We haven’t yet encountered a service that

intentionally brokers or facilitates informal relationship and

network building. Yes, we’ve seen services that help take the

strain off of existing relationships- services like respite and

holiday planning- but we haven’t seen services that act as

matchmakers, facilitators or mediators for building new or

repairing old relationships & networks.

Services that build skills and relationships are services that

enable people to change their behaviour. People like Eddy and

Mike and Liz teach us behaviour change is not only possible,

it’s critical to continuing to do well. But behaviour change

isn’t a concept we’ve encountered much when out and about

observing services and groups.

SHIFTING BEHAVIOUR The big question, then, is what could we do to shift older

people’s behaviours? How could we shape individual’s

mindsets, relationships and networks? How could we help

services, community groups, and friends and family function

as the sorts of relationships and networks that enable great

living? These are the questions we asked ourselves as we

moved from analysing people’s stories to brainstorming

opportunities for things to be different.

Pricing Arrangements in Residential Aged Care, Canberra, p. 2.

4. Productivity Commission, 2011, Caring for Older Australians, Report No.

53, Final Inquiry Report, Canberra.

Opportunities for great living

We found...People farthest from great living often

have closed mindsets that get in the

way of great living.

The opportunty1: Shaping MindsHow can we help people shift their

mindset so that isn’t a barrier to great

living?

We’ve identified what adds up to great living - but what about the people who are far from great living and those who are only part of the way there. What can we do for them?

Getting people closer to great living will mean creating more open mindsets, more motivational relationships and vibrant networks. To do that will require shaping the behaviour of individuals, family, friends, communities as well as providers of help and care. This section sets out 7 opportunities for shaping behaviour based on our work on the ground, theory and international practice.

Exactly what these opportunities will look, sound, and feel like, we don’t yet know. That will come from the next stage of our project, when we sit back down with the people and practitioners we’ve met to co-design and prototype solutions they want to be part of.

Shaping individuals

3 2

We found...People far from great living were often

estranged from family, disconnected

from friends, or part of a caring

relationship that was strained.

The opportunities 2: Rebalancing RelationshipsHow could we reduce the strain

of caring relationships on family

and friends?

3: Activating Family & FriendsHow can we activate family and friends

at the periphery?

We found...People far from great living lived in

settings with few opportunties to build

new caring relatinships or networks.

The opportunities4: Starting Relationships How can we help people to form

caring relationships ?

5: (Re)Starting NetworksHow can we enable people in caring

situations to build networks in the

community?

We found...People far from great living often

relied on services that struggled to

provide genuine caring relationships,

developmental experiences and diverse

forms of help.

The opportunities6: Caring Services How can services be part of a caring

relationship?

7: Diversifying Help Networks How can we diversify networks of help?

Shaping family & friends

Shapingcommunities

Shaping providers

1 6

4

5

7

PAGE 39PAGE 38 Opportunities

Reshaping late adulthood into it’s ‘never too late’ adulthood.

1. Shaping minds

Developing mindsets open to living and caring differently.

WHAT’S THE OPPORTUNITY?We tend to look as late adulthood as a

period of declining capabilities. That is

only one reality there are many other

realities: learning, intimacy, fitness,

good food, zesty times. The people we

met closest to great living saw a loss

of capabilities as a challenge. One to be

tackled with resilience, creative thinking,

adapted goals, and sometimes a little

bit of help.

In contrast, the people we met who

were furthest from great living felt

stuck, unable to modify things around

them, and sometimes resentful of help.

They didn’t adapt but maintained goals

beyond their reach, then felt down when

they couldn’t achieve them. To prevent

further disappointment they stopped

setting goals.

This opportunity is not about relentlessly

positive outlooks in late adulthood, it’s

about developing mindsets that are

open to living differently.

Most existing solutions for shifting

mindsets are talk-based professional to

client therapies. Our hunch is that we

can use them - but to appeal to people

in caring situations, we will have to

take these therapeutic approaches into

different contexts - making them both

less clinical and less new-age.

STARTING POINTSThe Reader Organisation (TRO) uses

therapy through books to shift older

people’s wellbeing, at a relatively low

cost. How else could therapeutic

approaches look at home, on the radio,

at the shopping centre, online or over

the phone? What about therapy through

film, music, news, magazines, humour?

Rather than professional-to-client

interactions, what about peer-to-peer

interactions that draw on the lived

experience of older people?

WHAT COULD THIS LEAD TO?Imagine a new suite of therapeutic

approaches based on things people love

doing e.g. knitting or mechanics; new

organisations promoting open mindsets

With & For: - People whose mindset gets in the

way of great living.

Behaviour change:- From a closed mindset to an open

mindset. Rebalancing fear and

widening sense of self.

at key transition points (e.g. retirement)

and in late adulthood; new coaching

roles for older people who have open

outlooks; new kinds of training for social

workers and psychologists; and new

spaces for therapeutic sessions: public

libraries, for example.

HOW IS THIS DIFFERENT?In contrast to social marketing used to

promote ‘positive ageing’ and ‘active

retirement’ to whole populations, we

propose focussing on individuals and

caring relationships. Whereas social

marketing approaches often avoid

issues of dependency, dealing with the

realities and possibilities of changing

capabilities will be core to this approach.

To complement targeted therapeutic

approaches focussing on grief and

loss, we propose an approach that is

proactive and open to anyone in a caring

relationship.

For more about TRO go to page 68.

PAGE 41PAGE 40

2. Rebalancing RelationshipsReducing the strain of caring by actively (re)balancing relationships.

WHAT’S THE OPPORTUNITY? Most caring we saw happened between

partners. For those close to great

living, relationships were balanced and

motivating. The ‘tough stuff’ was talked

about, when help was given it was

recognised with positive feedback, and

people found ways to keep doing what

they loved - together and apart.

For people far from great living,

caring responsibilities dominated

the relationship, leaving it strained

and stretched. Family members had

begun loosing respect for each other,

avoided asking for or giving help and

dodged difficult conversations. Partners

had often lost the common pursuits

and intimacy that their relationship

was founded on. People directly and

indirectly talked to us about the lack of

sex and touch.

The stress, depression and poor

health outcomes associated with

caring was what got this project off

the ground. Our hunch is that the

With & For:- Partners and family members in

strained caring relationships.

Behaviour change:- From caring dominated

relationships to motivational

relationships.

Opportunities

strain of caring could be alleviated

by actively rebalancing relationships

and encouraging exchange. Like

in Opportunity 1, recontextualising

therapeutic approaches could provide a

starting point.

STARTING POINTSPremarital classes, sex therapy for

couples, mediation, retreats, and family

counselling can help us to learn how to

repair and improve broken and strained

relationships.

WHAT COULD THIS LEAD TOImagine new kinds of family counselling

specific to late adulthood or new kinds

of intimacy & sex therapy specific to

older couples. What would relationship

therapy look like at home, in person,

or over the phone? Could they spread

in a way that didn’t always rely on

professional therapists? Could we

tap into existing respite dollars? Or

capitalise on savings to government,

who currently pitch in approximately

$40,000 per annum for publicly funded

places in low level residential care?8

HOW IS THIS DIFFERENT?Respite is designed to provide someone

in a caring situation with a short term

break from a relationship. We propose

to work on the caring relationships itself

and broaden our unit of focus from an

individual carer to all partners, family

members, friends and even services

who are part of caring relationships.

5. Australian Institute of Health and Welfare,

2004, Carers in Australia: assisting frail older

people and people with a disability, AIHW Cat

3. Activating Family & Friends

WHAT’S THE OPPORTUNITY.Adult children, grandchildren and

extended family played a limited role

in many of the homes we visited, more

often appearing at a network level

rather than as part of a core caring

relationships.

Sometimes family members were

emotionally close yet geographically

far away, but in many of the situations

we saw family were geographically

close yet emotionally distant. Stories of

estranged relationships were common.

Families and friend networks that

actively contributed to great living had

a good understanding of what was

needed, distributed tasks evenly across

the network, and provided relief to those

at the centre of the caring relationship.

What’s more, they got something out

of helping out: emotional closeness, a

feeling of reward, a stronger sense of

identity.

With & For:- People who have family in their

network who could do more.

- Family members who would like

to do more.

- Family members who’ve become

estranged.

Behaviour change:- From disengaged networks to

active networks and relationships.

We see an opportunity to activate willing

family members who are part of the

network and help them contribute to a

motivational caring relationship.

STARTING POINTSPlanned Lifetime Advocacy Network

(PLAN) have been supporting network

building around people with disabilities

in Canada for over 20 years. They aim

to create a good life for families living

with disability and provide training for

parents in building networks. PLAN

also supports “community coordinators”

who actively catalyse caring networks

around individuals. More recently

they developed Tyze, an online social

networking tool for families to identify

and distribute tasks amongst a family

and friend network. Families pay a

membership fee to be part of PLAN and

additional fees for training events and to

use Tyze.

WHAT COULD THIS LEAD TOImagine PLAN’s training, roles and

online networks adapted to support

older people and family networks

in Australia. The approach could be

spread by a new kind of membership

organisation or become a new offer for

organisations already working in the

relationships space.

PLAN’s tools focus on building networks

amongst those who want to help.

Reaching out to more disconnected

family members will require different

roles and tools, such as a new kind of

family arbitrator to address complex

family histories.

HOW IS THIS DIFFERENT?Whilst there are organisations

supporting family relationships, we’ve

not come across services that focus

on building and repairing family

networks around caring situations in

late adulthood. In many cases, we see

networks as an untapped resource.

Activating family as part of the network and building caring relationships.

To read more about PLAN, go to page 69.

PAGE 43PAGE 42

4. Starting relationships

WHAT’S THE OPPORTUNITY?We met a number of people who didn’t

have caring relationships, but wanted

to form some. They often lived alone -

separated from partners by divorce or

death and from family by estrangement

or geographical distance. Most talked

about not wanting to be a burden on

others and feared residential care.

Those closest to great living were

working to build caring relationships

from their existing network. Others,

who had a home they could sell, saw

moving to a retirement villages as

a way to build caring relationships.

Currently more than 160,000 Australians

live in retirement villages, but from what

we’ve seen they do little to build new

relationships or move people towards

great living. 9

We see an opportunity to support

people without caring relationships to

build a more varied, intentional and

caring communities around themselves

- whether they choose to move from

home or stay put.

STARTING POINTSCo-housing is an international

movement of people building supportive

communities. Whilst co-housing for

older people shares some features

with conventional retirement villages,

such as small homes arranged

around common facilities, there is a

big difference. In co-housing homes,

facilities and activities are all designed

and run according to the requirements

of residents. Explicit social contracts

setting out expectations of the kind

of help and care to be exchanged

between residents are common. The

collective design process plays a big

role in developing the community and

is sometimes facilitated by experienced

organisations like US based Co-housing

Partners.

WHAT COULD THIS LEAD TO?Imagine new collective living

arrangements, between people

with common interests that actively

contribute to great living, are easy to be

part of and share resources including

With & For:- People looking to form caring

relationships in advance of late

adulthood.

- People without caring

relationships.

- Retirement villages, social

housing for older people,

centre based services.

Behaviour change:- From passive aged communities

to caring communities.

care and help. These communities

could be centralised or distributed local

networks: people living in their own

homes but connected.

Building diverse links in these

communities could involve a ‘dating

service’ or a ‘find old friends’ service.

These new kinds of services could also

activate relationships within existing

communities such as retirement

villages, centre based groups or aged

housing.

HOW IS THIS DIFFERENT?The retirement communities we’ve

seen are not developmental. They do

little to intentionally open minds, form

relationships or diversify networks and

are only accessible to people who can

sell their home.

Supporting people to live in settings where they can build caring relationships.

Opportunities

No. AGE 41, Canberra, p. 16.

6. Access Economics, 2010, The Economic

To read more about co-housing,

go to page 70.

5. (Re)Starting Networks

WHAT’S THE OPPORTUNITYMany of the people we met with weak

networks once had rich ones. They used

to meet friends in their homes, go to

clubs, go fishing and volunteer - but

illness got in the way. Now finding the

energy to leave the house and take part

is just too much.

We see an opportunity to catalyse new

connections and rebuild old ones from

home. This could mean:

1) Creating at-home networks around

existing community groups, interest

based clubs, religious groups, learning

institutions and places of work.

2) Catalysing new distributed networks

that draw on people’s passions,

knowledge and latent assets - such as

unused workshops, untended gardens,

and spare rooms.

STARTING POINTSThe Alice Springs School of the Air

provides education to children in remote

outback settings, and is an example of

a centre based institution reimagined

as a distributed network. Initiated with

a radio broadcast from Adelaide in

With & For:- People looking to start or

restart social networks.

- Community groups, interest

based clubs, religious groups,

learning institutions and places

of work.

Behaviour change:- From ‘come to us’ to

‘we hook you up.’

1951, the school today enables learning

for 120 children spread over 1 million

square kilometres. The platform has

evolved to provide learning experiences

through video, audio, materials send

by post and whole school events 3 or 4

times a year.

US church Saddleback provides an

example of how to supporting the

development of at-home networks.

Nearly all of the 20, 000 members are

part of one of the 3,000 ‘cells’ - groups

of 6 or 7 that meet in each other’s

homes. Saddleback’s core business is

the recruitment, training and retention

of volunteer leaders who start and run

these groups.10

WHAT COULD THIS LEAD TO?Imagine providing staff and members

of existing centre based groups with

the training and technology to re-

connect former members and shape

activities so that they provide value to

distributed members. The community

care provision market is estimated to

be worth more than $1.8 billion a year.11

Could a small share of this market be

drawn on to re-start networks?

Imagine new roles and technology to

identify and initiate latent groups in

the community, and then to run those

groups in people’s living rooms, gardens

and sheds - making use of common

interests and underutilised resources.

HOW IS THIS DIFFERENT?In contrast to centre based groups

which convene only for specific

activities, this opportunity focuses on

building and maintaining relationships in

varied contexts. Whilst there are many

examples of video and the internet

being used to reach older people, we’ve

found few examples of solutions that

actively build and maintain distributed

networks of older people.

Catalysing new connections and rebuilding old ones from home.

Value of Informal Care in 2010, Report for

Carers Australia, October, p. 3.

7. Family and Community Services, 2010,

Home care client satisfaction survey results.

Available: http://www.adhc.nsw.gov.au/

individuals/help_at_home/home_care_

service/your_feedback/

PAGE 45PAGE 44

6. Caring servicesShifting professional carers and services from providing help to enabling development.

WHAT’S THE OPPORTUNITY?The people we met furthest from

great living were dependent on formal

services for their caring relationships.

Getting these people closer to great

living will mean services becoming one

part of a motivational realtionship.

Where services were motivational,

workers didn’t only provide practical

help, they provided developmental

experiences aligned to what people

loved but thought they could no longer

do. They didn’t just cook - they made

meals an event; they learnt languages

together; they visited exciting places.

What’s more there was reciprocity:

workers did things with people, not for

them, and had a good time.

Mos of the services we saw, though,

simply provided help in an efficient and

friendly way. And whilst people liked

their professional carers, in some cases,

the relationships were inadvertently

creating greater dependency. To move

people to great living, care services

will need to shift from providing help to

enabling ongoing development.

STARTING POINTSThe Green House Nursing Home

Alternative has improved outcomes for

residents and staff of residential care

by adopting a set of developmental

principles, redesigning the physical

space and creating a new role - the

Shahbaz. Shahbazim provide personal

care, cook and clean and because of a

different organisational model, spend

more time with residents building

personal bonds. All this at a cost

comparable to traditional residential

care.

WHAT COULD THIS LEAD TO?How could we turn in-home workers

into something closer to the Shahbaz

role? How could we apply the principles

and practice of Green Homes to in-home

care? Imagine a new set of protocols

and roles for in-home workers. Or

new kinds of training and accreditation,

professional development, pay scales,

and matching processes between

‘workers’ and people requiring care.

With & For: - People who rely on services for

caring relationships.

- Providers of domestic and

residential care services.

Behaviour change: - From helpers to enablers.

Making all this happen at scale

will be dependant on shifting the

federal policies which tightly control

the type and quantity of care. A

significant amount of resources goes

into residential care. In 2009-10 the

government provided $7.1 billion to

residential care.12 Could a small part

of these resources be the start-up

capital for new, more developmental

solutions?

HOW IS THIS DIFFERENT?Existing models of in-home

and residential ‘care’ are in-fact

transactional help, albeit often provided

in a warm and friendly way. This

opportunity looks at how we can shift

the role of care workers so that it is

more developmental for older people

and more rewarding for workers.

Opportunities

8. Commonwealth of Australia Treasury, 2009,

Australia’s Future Tax System - Part Two

To read more about Green House,

go to page 71.

7. Diversifying Help Networks

WHAT’S THE OPPORTUNITY?The innovative services we’ve seen

don’t start with formal assessments,

but with conversations about older

people’s aspirations. But when it

came to connecting those people to

services to achieve these aspirations,

things broke down. Despite the

rhetoric of ‘consumer choice’ there

is a limited breadth of services

available - contrained by government

funding - and these are not necessarily

what older people themselves want.

This limited choice provides a direct

challenge to innovations like consumer

directed care.

People closer to great living found and

shaped help into unconventional forms

- cooking experiences, pagoda building

help and travel buddies. People further

from great living were happy with any

service they were offered and didn’t

think to shape it to better fit their needs

and aspirations.

We see an opportunity to increase the

quantity, diversity and quality of help

available and to shape demand for

different kinds of support that is more

developmental - a particular challenge

for people who are risk adverse and

want to stick with what they know.

STARTING POINTSJag, which translates as ‘I’, is a

co-operative of disabled people in

Sweden who hire their own personal

assistants - including friends, family,

or recommended carers. Jag shapes

demand for help, makes it easier for

disabled people and their families

to shape what help they get and has

created a new market for would be

personal assistants.

The Amazings is a supply driven

platform for retirees to find a market for

their skills, knowledge and passions.

You can use it to go on history walks,

learn to knit or dance. The platform

uses advertising to find a market

for experiences retirees want to run

and then handles payments from

attendees.13

With & For:- People looking for practical help

and new opportunities to learn.

- People looking to help others

- People looking for new business

opportunties

Behaviour change:- From latent help to active help.

WHAT COULD THIS LEAD TOImagine a new platform for identifying,

training, and hosting new kinds of

developmental services. Imagine a

new industry of computer fixers, cake

decorators, dog trainers and armchair

travellers. Or new ways for people close

to great living to share their strategies

with families and the younger old.

Imagine something that tapped into

disposable income and state provided

funds to enable great living for all.

HOW IS THIS DIFFERENT?Innovations we’ve seen in consumer

directed care have focused on creating

the means to purchase different

services and on brokerage to existing

services rather than catalysing new

markets of help and shaping demand

toward developmental experiences.

Increasing the quantity, and quality of help available and shaping demand for diverse kinds of developmental support.

Detailed Analysis, p. 634.

To read more about JAG,

go to page 68.

PAGE 47PAGE 46

Economic oppportunitiesInvesting in developmental solutions could reduce future costs. Leveraging people and money already invested in aged care and activating new resources in the community requires different practice, not neccessarily more money.

Over the coming decades, government spending on aged care is projected to draw even with other big ticket items such as education and defence.14

With such massive spending, even small innovations could have a significant impact on the public purse. For instance, a 1% reduction in use of the aged care system would free $110 million per year.15 That’s $110 million that could be used to enable great living.

Our work with people, with services and our analysis of financial projections suggest five economic opportunities:

We could save money(1) We could reduce entry into expensive residential care.

We could get more from existing resource(2) We could sustain and increase contributions of family and friends.

(3) We could get more from existing investment in community and aged care services.

We could activate new resources(4) We could increase disposable income spent on aged care.

(5) We could activate non-financial resources in the community.

Why invest?

(1) WE COULD SAVE MONEY The research is clear: keeping people in their own home,

doing well, for longer, saves money. The average cost of a

person staying at home with the help of community services

is less than a quarter the annual cost of a place in residential

care. If an intervention can keep just one person out of high

level residential care for an additional two years it would save

the state well over $100,000.16

(2) WE COULD SUSTAIN AND INCREASE THE CONTRIBUTION OF FRIENDS AND FAMILY Friends and family across Australia provide an estimated 1.32

billion care hours per year. Low estimates value this at $6.5

billion per year.17 Keeping friends and family healthy, and

experiencing great living, is critical to the aged care system’s

financial solvency. Increasing the number of friends and family

taking on a caring role would create significant cost savings

for the state.

(3) WE COULD GET MORE FROM EXISTING INVESTMENT IN AGED CAREIndeed, in the decades to come, more and more Australians

will rely on services. By 2050 it is estimated that over 3.5

million Australians will use aged care services.18 Yet rigid

funding and accountability requirements mean few of the

services we saw actively contributed to great living. Few

worked to activate family and friends and few worked well at

the relationships level. Many could.

(4) WE COULD INCREASE DISPOSABLE INCOME SPENT ON AGED CARE User-pay solutions in the ageing space are controversial and

rightly debated. We are not interested in for-profit services,

but we are interested in exploring the potential for greater

personal contribution within not-for-profit models.

Whilst we spent time with people for whom money is a daily

concern, many of the people we got to know could afford to

contribute more to services than they currently do. This is

backed up by the research that shows a significant proportion

of retired people have disposable income. Whilst government

pensions are the dominant source of income in half of

households aged over 65, in the other half of households the

majority of income comes from other sources.19

In services we saw a vast disparity between actual costs,

prices charged and what people would be willing to pay. One

service we came across provides cleaning to older people

for $7.50 an hour. The fee is reduced or waived dependent on

ability to pay, but never increased. The real cost of the service

is close to $33 an hour.

9. Productivity Commission, 2011, Caring for Older Australians, p. 29.

10. http://saddleback.com/

11. Value based on government expenditure estimates for aged care

packages at home [HACC, CACP, EACH, EACHD, TCP, MPS] in 2006-07

only. Excluding expenditure for respite care and financial support for

carers valued at an additional $1.2 billion per year.

12. Productivity Commission, 2011, Caring for Older Australians, p. 30.

13. http://theamazings.org

14. Commonwealth of Australia Treasury, 2011, Intergenerational Report

2010, p. 47.

15. Total cost of aged care 2009-10 is $11 billion. Australian Institute of

Health and Welfare, 2011, Residential Aged Care in Australia 2009-10:

a statistical overview, p. 20.

16. Calculation based on comparison of the total cost per recipient in

(5) WE COULD ACTIVATE N0N-FINANCIAL RESOURCES IN THE COMMUNITYThe current aged care system treats older people as passive

recipients of resources, but most of the older people we’ve

met have resources to give. Leon can repair trailers, Dudley

has a fully equipped car workshop collecting dust. Barbara

knows how to make delicious shortbread, Liz can teach

English and Mike makes films.

Finding ways to systematically identify and exchange the

resources of older people and others in the community means

moving to co-produced service models. Models where people

not just professionals design services, make decisions and

share resources. Isn’t that what the ‘personalisation’ and

‘consumer choice’ agenda in aged care should be all about?

PAGE 49PAGE 48

There is another reason to invest in the 7 opportunity areas, and it has little to do

with cost savings or resource generation. It has to do with our morals, our values

and our own future.

Western society values children for their freshness and potential. One of our pillars

is equal opportunity - the notion that every child should have the same chance to

succeed and grow no matter their background.

Well, we believe the same should be true for older people. That every older person

should have the same chance to succeed no matter their illness, dependencies,

or even their past decisions. And that we should value older people for their lived

experience and potential.

Success, we think, is great living. It’s doing things you love, being close to people

around you, eating great food and having a laugh, and not letting too many things

get in the way.

We don’t think it is too tall an order. After all, isn’t it what we would want for

ourselves? For our friends? Thanks to science and modern technology, most of us

can expect to live into our late 70’s and 80’s. But we shouldn’t expect to just be alive

- we should expect to thrive. Knock on wood, one day we will all be in the shoes of

people we spent time with in this project. And our hunch is we’ll want to add life to

our years, not just years to our life.

A society with thriving older adults wouldn’t erase the inevitabilities of age - the

natural shifting of our capabilities and dependencies. But a society with thriving

older adults would mean that dependencies don’t just go up as capabilities go down.

It would mean building on what people can do, want to do and love. It would mean

recognising that older adults deserve experiences as developmental as society

expects for all children. Whilst there is a strong financial argument for this, we also

believe that it would make late adulthood a chapter of life to be excited about. Surely

that’s an investment we all have cause to get behind.

The moral imperative

“We have to think in a new way about care. We have to think through the mystique of age...”- Betty Friedan

Why invest?

What’s next?

In the next 2 months, we’ll move from broad opportunity areas to concrete ideas.

We’ll once again spend time with people, in their living rooms and kitchens, co-

designing solutions they want to be part of. Then, we’ll prototype, and iterate those

solutions. All along the way, we’ll be looking for partners & investors to help us

launch the most compelling solutions later in 2012.

Now that we’ve looked, listened and understood our next chapter is about creating.

Appendix:Behind the scenes

Index52 Learning and working

53 The Working Backwards approach

54 Finding people

56 Talking with people

58 Service shadowing

60 Reflections from people we met

61 More people we met

66 Reflections from the team

68 International examples

72 What we read

74 Bibliography

76 Glossary

77 Contributors

79 How to share this report

PAGE 53PAGE 52

Learning and working

By Radical Redesign Co-leads

Chris Vanstone & Sarah Schulman

A little over two years ago we moved to Adelaide to set-up

The Australian Centre for Social Innovation’s Radical Redesign

Team. Few people in Australia were blending design, social

science, community development, and business methods to

solve social problems. TACSI wanted many more teams to be

able to do so. The question was how?

During our first project in Australia, Family by Family, we ran

workshops and events to spread our approach. We found they

didn’t shift practice. Attendees often left understanding what

it meant to Work Backwards, but were not equipped to Work

Backwards.

That’s why we’re developing a curriculum to equip

interdisciplinary teams to Work Backwards. Rather than focus

on methods and tools, we’re focussing on the behaviours that

enable teams to co-design and prototype new solutions.

One of our hunches is that the best way to adopt these

behaviours is to combine live project work with structured

learning. We’re prototyping a new hybrid ‘work & learn’ model

with the Radical Redesign Team. Indeed, the curriculum is

a project running parallel to the caring project. Learning

experiences include: camps, classes, workshops, and new

models of reflection and feedback.

We’re also prototyping this hybrid ‘work & learn’ model within

the public sector. With the Department of Human Services,

we’re working on a project to improve outcomes for children

starting school and build civil servants’ capacity to think and

work differently.

In this Appendix, learn more about the approach, the

behaviours underpinning Working Backwards, and what is

has looked like to apply the behaviours & the approach in this

project.

Appendix

The Working Backwards approachEarlier on, you read about and saw the tools we used to talk to

people about their lives and aspirations [see p. 8]. Where the

Look and Listen phase was all about understanding people’s

versions of great living, in the upcoming Create phase, we’ll

work with people, practitioners, and policymakers to generate

and visualise ideas for enabling great living.

Our approach to working with people, practitioners, and

policymakers comes from a critique of traditional social

problem-solving. Rather than move from problems to policy

to practice to people, we Work Backwards. We build from

problems to outcomes, from outcomes to practice, and from

practice to policy.

To do that, we bring together critical policy thinking with

people-driven design, supported by social science, community

development, and business expertise. It’s not just different

disciplines we bring together but a different set of behaviours.

Behaviours for Working Backwards:Analytic behaviour - Identifying patterns and trends; breaking

complex concepts into component parts; asking why and how

questions.

Generative behaviour - Identifying and exploiting

opportunities; developing new ideas; applying concepts from

one field to another; thinking visually and laterally.

People behaviour - Talking with; observing; listening;

understanding, respecting and contextualising people.

Making behaviour - Turning abstract ideas into real, tangible

products; using your hands.

Feedback behaviour - Showing work; making improvements;

offering constructive suggestions to others; failing;

persistently iterating.

Storytelling behaviour - Developing rational and emotive

arguments; using different mediums; bringing ideas to life for

people versus practice versus policy audiences

Finding people, talking with people, service shadowing,

reviewing literature, analysing, identifying opportunities

Co-designing, brainstorming,

visualising

Testing new uer

interactions, materials and

roles

Testing policies,

procedures, back-end

systems

Developing the business case,

telling the project story

New opportunities

Potential solutions

PAGE 55PAGE 54

Finding people

But what convinces people to get involved?

We wanted to meet as many people as we could in as wide

a variety of caring roles as possible - the full time stay at

home carer, the person who pops in on a neighbour, a person

managing alone, the husband and wife who help each other

out. We had a hunch that many people’s voices are not heard

because they don’t engage in spaces, groups or conversations

that typically feed into research.

THINGS WE CONSIDERED THINGS THAT FAILED

THINGS THAT WORKED:

That’s why we spread our net broadly - heading to shopping

centres, libraries, public spaces and knocking on peoples’

doors. Meeting strangers out and about, who were busy

and going places, meant we had to develop an offer & value

proposition that would persuade people to stop, chat, and

want to meet with us again.

1. ‘Hug-a-bear’: a friendly way to get people’s attention.

2. A game experience with questions about caring.

3. An old vintage style cafe

We didn’t pursue these since in the end they seemed too gimmicky, lacked intentionality, and didn’t have a clear value proposition.

1. Asking people if they were a carer.

2. Using clipboards to collect people’s details.

3. Free flowers as an incentive to talk with us.

The caring question was too specific, the clipboards were too formal and flowers didn’t help us attract or stop people.

A table and posters offering free

bicuits & bananas for a chat. People

were curious, but still comfortable.

We felt people responded openly because we created an experience that was warm and inviting - but not over the top - and used language that was conversational and clear.

Giving examples, with illustrations, of

who we wanted to meet.

Using language around “helping out”

rather than around “caring.”

Appendix

“So what we’re doing today is collecting people’s contact details.”

“Do you know

someone who is doing

this kind of thing, or

perhaps you’re doing

it yourself?”

“We’re doing a

project with the local

Council about people

helping others out.”

THREE PHRASES THAT WORK

People were happier getting

involved when they believed

other people were too.

It put people less on the spot

about their experiences and let

them volunteer to help more.

Including a reference to our

project partners gave us

legitimacy with people.

Whilst we found certain words and phrases helpful, on reflection, we think our success came down to an ability to talk about the project from multiple angles until something resonated and kick-started a conversation.

Top: Recruiting at a community centre, Left: Filling out interest sheets on John Road, Salisbury. Right: Recruiting outside a Woolies in Kingspark, Unley.

PAGE 57PAGE 56

Talking with peopleWe find the best way to get to know people is to spend lots

of time with them in their own environment. It’s an approach

based on anthropological methods like ethnography. Often

it starts with a chat - some time for everyone to get familiar

with each other, and then continues into more unstructured

time doing everyday things like going shopping, visiting the

hairdresser, or going on a caravan holiday. These immersive

experiences help us to gain a better understanding of people’s

lives. They bring to light interesting disconnects between

what people say they want and do and what they actually do.

In other words, they get underneath mismatches between

people’s perceptions and reality.

But how did we know what to ask? And what to look for?

CREATING A TOPIC GUIDEBefore we met people, we created a list of topics we had

a hunch might be valuable to explore:

• Looking at the current lives of people and seeing

their everyday contexts and networks.

• Discussing hopes and aspirations for the future, and

discovering if they are on track or far from it.

• Focussing on relationships, looking at power

balance, use of language, roles and what was

exchanged.

KEEPING OPEN & CURIOUSHaving an unstructured approach led us us down

interesting paths with people:

• We used the topic guide as a prompt not a survey.

• Introducing topics fluidly, asking questions

opportuniticly, and going with the flow of conversation

rather than trying to overly direct the conversation.

Appendix

Tea & Cake | First Visit Interaction

Topic Guide & Script - Caring Relationship

_________________________________________________________________

What are our opportunities?

RoutinesWe’re interested in people’s everyday routines and rituals

Stresses

Networks, Connections and Services

We’re interested in understanding the types of networks and services that people in caring

relationships rely on to make things work. Do friends provide more support than families? Do they

have a particularly strong neighbourhood network where everyone keeps an eye out for each

other - what are some of the interesting relationships?. Or do they not have a network at all, and is

this a good or bad thing? Exploring “happy” and “sad” networks will allow us to see how we can

build and support what already exists and also figure out how people who have no current

network can begin to build one around them. We want to understand what are the existing people

resources out there we might draw on, and what are some of the existing interaction out there we

might improve or build on.

Interests and Capabilities

We’re interested in discovering what people are interested in doing and where they get and

maintain motivation. We’re curious about why some people give up their interests, while others

keep going or building them. In particular we want to understand if there’s a gap between

people’s perception of their capabilities and the reality. We also want to map changing

capabilities, interests and ability levels over time to see patterns of change, and be able to

understand if people adjust their aspirations to match their perceived levels of capability. We are

thinking about capabilities in a broad sense - physical, mental, social and emotional capabilities.

We might hang solutions from here ...

Outlook and Aspirations

Understanding the gaps | discrepancies between ... | what is doing well for you?

We want to learn more about how people see themselves, how their outlook impacts their

wellbeing, what influences this, and what motivates them, what are people’s goals, aspirations or

versions of a good life, and how have they shifted or adapted over time. We also want to find out

what people want in their lives, their values, what they do well, and what’s missing.

Changes, Transitions and Directions

We’d like to understand the key moments when things change in people’s lives and the coping

strategies they have. What are the life skills and resources which help people reach the other

side? How do people plan, make decisions and learn from previous experience of pivotal times?

How do people change and adapt in altering circumstances? The event that preceded/caused

change is important but we are more interested in the journey through the period of change. Is

there something about people’s attitudes to change that influences how they deal with it? (fear,

excited apprehensive, wishing for change?) ... what happens at different life stages?

Things to think about BEFORE the meeting

IDentify lead person (drive structure of conversation and focus on carer)

ID support (focus on cared for and keep an eye on time)

The ‘Tea and Cake’ topic guide. Jess and Lou having tea at Rosey’s in Unley.

TOP 3 EXPERIENCES WE HAD WITH PEOPLE• Joining a family caravan holiday for a day helped us

see how an extended family comes together, what

that means for people and what makes it work.

• Having a cigarette with someone despite being a

nonsmoker built rapport and created a whole new

atmosphere.

• Observing how people interacted with professional

services - like cleaners - helped us see the

importance of the chat that happens first.

But isn’t it tricky to have such personal conversations with people?

THINGS THAT MOVED CONVERSATIONS ALONG

“So can you tell me a little bit more about ....”Prompts that dug deeper into the subject, letting unexpected

things rise to the surface.

“How long have you lived here?”“What have you been up to today?”

Using friendly questions that open up further pathways for

conversation.

“Why?”Getting at the meaning behind an action or thought was more

revealing than the original story.

TOOLS THAT HELPED GET AT INTERESTING STUFF

• A blank week planner that helped us get an overview of

the routines and regular connections that people have.

• A card sorting exercise that asked people to identify the

things that it would be wonderful to have more of in their

lives.

• A set of idiom cards gave us a way to discuss people’s

mindset & attitudes.

All these tools helped us to start meaningful conversations

around topics that might have been difficult to bring up

otherwise. Topics like sex and intimacy, estranged families,

planning for death, feeling lonely and stressed.

Dan and Dudley choosing his ‘living great’ cards. Barbara’s ‘living great’ cards.

Susan with Muriel and Norm on their caravan trip.

PAGE 59PAGE 58

Service shadowingWe wanted to get an idea of what happens in the organisations

and services within the ageing and caring space. But we find

that often the bits we learn the most from aren’t the things you

can read about on their website but the day-to-day structures,

interactions and goings on. So we acted as a fly-on-wall to

various services observing, experiencing and understanding.

6 THINGS WE LOOKED OUT FOR1. Rituals and Routines - the daily behaviour and

actions of people that signal acceptable behaviour.

2. Stories - the events that people talk about inside

and outside the organisation.

3. Symbols - the visual representation of the

organisation.

4. Control Systems - the ways that the organisation

and its resources are controlled and distributed.

5. Organisational Structure - the structure defined

by the organisation chart versus the unwritten

lines of power and influence that indicate whose

contributions are most valued.

6. Power Structures - the pockets of real power in the

organisation.

TOP 3 SURPRISING THINGS WE DISCOVERED1. The services we encountered were overwhelmingly

positive about us coming along, and open to thinking

about how to shift practice & improve outcomes.

2. Staff in organisations willingly shared their frustrations,

and had many strategies for doing good work in spite of

rigid systems & structures. Many were hungry for more.

3. Lots of services provide more than what they say they do

in their promotional materials, like the maintenance man

who doesn’t just change light bulbs but provides a good

chat and is beloved by the people he visits regularly.

Appendix

From the top left: Mandy from Carers Support, Salisbury; Ryan with Muriel and Norm’s cleaner @ their home in Unley; The Mens Shed at Edinburgh in

Salisbury; Northern Carers Network Support Group; Dave from Unley Maintenance.

AnalysingAfter meeting such interesting people, we needed to

make sense of it all. First, we described people’s current

situations and realities.Then we worked to understand

their behaviours, motivations, and any contradictions.

Next, we segmented people according to wants &

capabilities. Finally, we generated ideas for what could be.

TOP 3 WONDERFUL WAYS WE CAPTURED OUR EXPERIENCES:• Immediately after leaving a house / chat / service we’d

record ourselves on a dictaphone, dumping all our

recollections and initial thoughts so we didn’t lose any

with time and distance.

• We’d pore over notes and recordings and highlight

people’s language, repetition of concepts, and anything

that was jaring or out of the norm.

• When writing our experiences, we’d capture both the

conversation and context but also group recurring themes

to make it easier to process and compare.

3 LENSES WE USED DURING ANALYSIS:• We compared the existence of relationships and

networks with how much those relationships &

networks contributed to great living.

• We compared people’s openness to adapting to change

with their ability to build new relationships & networks.

• We compared people’s reliance on others with the

reciprocity and balance in their relationships.

The Radical Redesign team on analysis day.

PAGE 61PAGE 60

It’s been good actually - cause it just

shows you how positive I am, through

the cards. Even though I have my ups

and downs it shows that I’ve got that

positive attitude.

Suzanne

Carers and carees are frequently called upon to be

practice subjects for allied health students. Occasionally

we see the outcomes as pie charts and bar graphs in

disability magazines. Sometimes we get trotted out to

be photographed with a politician or new a CEO because

Liz and I present well.

And so it was with some trepidation and wariness that

we responded to the handout from TACSI.

This actually became a therapeutic process and a

reexamination of ourselves and our relationship, and

processes as we articulated them to Adele.

A personal relationship developed between Adele

and us, not surprisingly with the close proximity and

personal exchanges.

It has been a very positive experience.

Mike and Liz

I hope that the experience was of some

help to you and thank you for giving me

the opportunity to be part of the project.

It was just a day in the life of Irene

Barker and I feel so lucky and privileged

to be able to live my life the way I do.

Irene

Reflections from people we met

Appendix

Dear Jess,

We are all sitting back watching our golden oldies now dwindle down in numbers (from the village our parents came from and were the 1st to migrate in the 1950 & 60’s).

From a simple talk around the table at the little cafe with Mary, Helen, David at Hyde Park to come to this so far has been overwhelming for me.

It was not something I was expecting for some-one to take interest in what we are doing out here with our loved ones.

Soula

More people we met

EILEENEileen is sixty-nine. She laughs a lot and tells lots of stories.

She goes dancing every Sunday, reads horror books regularly,

and most evenings plays a bit of Bubble Witch or another

game on Facebook. Through dancing, she met her boyfriend

of four years, a fifty-five year old who shares her love of

ridiculous costumes.

She has three children in their forties with her former

husband, a bricklayer who died twelve years ago.

Eileen has lived with a heart condition since she was

nineteen:“I have sleep apnea and high blood pressure, I had

my first heart surgery at age 19, and a valve replacement

in 1988, and now I have a bulge on my ventricle. I have

osteoporosis. And now the emphysema.” Her boyfriend’s

father died of emphysema, and recently he said “don’t grow

old on me.”

Eileen, by her own admission, is bored. “I don’t do anything

during the week. Hardly see anyone.” She spends most

weekdays at home. She goes to the library every couple of

weeks.

“There is nothing to do in Salisbury. I would like to use the

soccer fields for entertainment. Maybe a comedian.” She says

that she used to be a social committee in the neighbourhood

years ago, but that a neighbour had it shut down.

She and Robert see each other on the weekends, which they

pack with dancing, doing things around the house, and driving

over to visit the youngest of Eileen’s three grown children.

Eileen says that she’d like to have better health, and places

a premium on keeping sharp: “Keeping me brain intact...I

don’t want to get Alzheimer’s.” She would like “people being

concerned about [her] feelings” and dreads the thought of a

nursing home.

CHLOE AND GRACEChloe is 35 yaers old. In 1999, she was in a car accident that

resulted in a brain injury and loss of mobility, restricting her

to a wheelchair. When we met her she happily chatted with us

and came across as very socially capable. Mum Grace later

explained that she has issues with short term memory and

finds herself emotionally disconnected from others.

Grace has been the main carer for her daughter for the last

13 years. She spends all of her time with Chloe except for

when she is with her Dad on the weekends, or Grace’s sister

Deb who looks after her one day a week. Deb registered as

an official carer and so gets paid for her time with Chloe, an

arrangement which Grace thinks is critical for the family’s

ability to have some time each for themselves.

Grace tries to create a world around Chloe that is interesting

and varied. They have students who lodge in their house and

occasionally they have an evening of pizza and Pictionary.

They also have people who work with Chloe from various

university programmes - some of the skills they work on

benefit Chloe, like physiotherapy, but others are less helpful

overall. Initiating activities for her like growing plants actually

causes extra work for Grace - she has to remind her about

watering and care because of Chloe’s extreme memory

deficits - and in fact Chloe gets little from the experience. Also

every time someone new comes to work with them Grace has

to spend energy training them in and getting them familiar

with Chloe’s needs. Still though, Grace’s wish for making

things better would be for Chloe to have more contact with

young people.

They share a number of activities. Grace enjoys writing, which

started with letters to Chloe when she was first in hospital in

a coma after the accident. She has since written a book about

her experiences which she is considering publishing. Chloe

writes poetry and some small pieces of prose with Grace’s

intuitive encouragement. When Chloe meets new people they

give them a poem she has written to enable them to become

aware of the clarity of Chloe’s thoughts. They are also aiming

to publish this collection of work. A highlight that they talked

about was having her poems read at a local cafe and how this

enabled them to meet new people.

Grace also works part-time and enjoys gardening. She knows

that she should see friends more often but sometimes when

she has time to herself she just finds herself needing to ‘glaze

over’ and be by herself. For Grace the physical side of Chloe’s

care isn’t the tough part, rather it’s the emotional aspect of

everything.

PAGE 63PAGE 62 Appendix

JEAN & DEIRDREDeirdre has four people she identifies as her “caring

relationships.” There’s Chuck, a friend who has been recently

widowed and comes over once a week for dinner. And Ivy, a

90 year old widow who lives next door who she occasionally

checks up on. Dalcy, her cousin who she recently put in a

nursing home because of her dementia and Jean, a 90 year

old friend who she sees most days of the week.

Jean and Deirdre met nine years ago at a quilting group.

Initially Deirdre had just been driving Jean and her husband

around a few times a week, but when Jean’s husband passed

away a few years ago there was a need to provide greater

social support for Jean.

Jean is 90 years old and still lives in her own home, which is

7 minutes away from Deirdre. She is part of an online quilting

community and likes to play games on the computer to keep

her mind sharp. Jean uses a walker and cooks for herself

frequently: she particularly likes to make pies.

Deirdre’s week revolves around different social activities

and spending time with Jean. With occasional variation of

weekend activities, Deirdre’s week is very structured. She

“doesn’t do things by halves.” Highlights of her week include

“coffee with the girls” where they “solve the problems of

the world” and spending time with Jean. Deirdre and Jean

go shopping, watch “Letters and Numbers” among other

programs, and do different craft or quilting activities together.

When talking about herself Deirdre tells us, “I come in about

third- my husband, my friends and then me.” Her values are

inherited from her mum who always used to welcome “the

waifs and strays” to dinner. When Deirdre broke her two wrists

a few months ago she was able to rely on Bernie, her kids

and friends to take care of her. A friend came and helped her

shower in the mornings, and Bernie took over the household

duties.

Deirdre’s husband Bernie is “counting down the months” to

retirement. They’re planning to go overseas and Deirdre notes

how she will have to “organise someone to help Jean and

Chuck” at that time.

BERYL AND JONBeryl and Jon are “old worldly and independent.” They get the

bus everywhere and never get lifts from older friends as they

don’t trust drivers who can “barely get into their car.”

Jon was diagnosed with Multiple Sclerosis four years ago.

In the same week, Beryl was diagnosed with bowel cancer.

At the time Beryle wished, “somebody could have come and

talked to me.” Instead she had to “just soldier on” on her own.

Beryl also has glaucoma but she tells me her new pair of

glasses allow her to see better than she has in a long time.

Beryl thinks the secret of old age is “being in the right place

at the right time.” They describe their move to a retirement

village as the “best move we ever made.” When Beryl was

in the hospital two weeks ago Jon could still see her at the

hospital “next door here every morning, every day, twice or

three times.”

In their 50’s they lived in a “fastidiously maintained” house

Victor Harbour where they both worked as carers: Jon with

psychiatric patients and Beryl in a nursing home. They both

say the experience “changed [their] lives” because they “saw

the other side... a lot of suffering... a lot of hardship.”

Currently they’re both “getting on fine.” Jon’s MS is still in its

early stages; he tells me he has constant “pins and needles” in

his feet. They mainly get by on their own with the help of a few

selected services: a shopper that helps with a fortnightly shop

and a cleaner that helps with the bathroom floors.

Beryl’s son is the only other family member who remains in

good contact with them.

Beryl’s hopes to “grow old gracefully and take it slowly and

carry on as best as I can.” She fears being a “burden” to others

and people coming round out of obligation.

LANCELance, by anyone’s standards, has had his share of difficulty

and misfortune in life. Despite everything, he’s upbeat and

friendly and open about his misfortune. He’s also chatty. “I talk

to every man and the tree, the dog, the cat, the budgie, I talk to

everybody!”

Lance is married to Meredith, who he met through a Carer

Cert IV course four years ago. “I’m on my third wife... I wear

them out.” Lance says he and Meredith are “both the same,

we’re both injured but we probably worry about helping other

people than helping ourselves.”

Lance lives off of a disability pension, but he works as a

handyman to “get out of the house. You can sit at home and

be miserable or you can go out and create pain and know

that you’re alive.” Lance used to golf and ride a Harley, but

had to give those up after breaking his back in 2008. He still

watches golf, and he’s replaced the social aspect of it with the

handyman work he does.

Lance has also started writing poetry in the past few years.

When “my sister passed away of cancer and I wrote poems

for her and I stood in front of congregation of 70 people and

I stood there and I [could] talk to them about other people’s

feelings... I wrote poems about how heaven’s got a phone, all

you gotta do is connect it, connect it with your heart.”

After his back injury, he also became more earnestly

interested in WWII research. He has an entire miniature

museum full of Anzac memorabilia and travelled to New

Guinea this year.

He says the visit helped to give more perspective. He spent a

lot of time in the local villages talking to people, and he’s now

involved in sending back medical supplies to the people he

met.

“This is what we’ve always done. We’ve always wanted to go

out and help people.”

JOAN AND DON“They make them tough, Yorkshire girls,” Joan tells us,

and she would know as she grew up there before moving

to Adelaide with husband Don and their young children in

1963. Now their children are all grown up and living around

Australia.

Don has suffered a succession of strokes and health worries

which began soon after his retirement in 1995. For over

10 years they managed and adapted, making use of stuff

like respite and local Council maintenance support, but the

last incident meant Don had to move into full time care in a

nursing home. Joan visits every weekend and despite the fact

that there isn’t much conversation for Don, and he can’t have

a beer, we hear he’s adaptable and making the best of things.

He did used to ask when he was going to be able to come

home though.

Soon he’ll possibly be moving as Joan is going to live down

south with her daughter and grand daughters in a new home

they have bought together. Hopefully Don can be moved to

a place closer to this house. They already know some of the

nursing facilities in that area from when Joan got respite

support, although it’s a different experience now. Joan hopes

that the move will mean more company for Don and he’ll get

to see the grand children and old friends more than he does

currently.

BOB AND JEANFor childhood sweethearts Bob and Jean, “life’s been doctor’s

appointments” for the last few years. It was Bob’s health (a

severe stroke in 1999 and a number of falls since then) that’s

led to a recent move to an assisted living unit. “Last time he

fell, I couldn’t pick him up,” says Jean. It doesn’t feel quite like

home just yet- lots of their furniture wouldn’t fit into the new

space and had to be given away, but they are slowly starting

to explore their surroundings (like bingo, and happy hour), and

Jean has started gardening again (although gardening is also

provided as part of their services).

They struggle sometimes with “being in each others pockets”

and our great living cards revealed they think it’s important

to have time alone, and that you can’t teach an old dog new

tricks. Bob says, “my walking’s not the best - can’t hurry

myself” and so he does need to rely on Jean’s help for the day-

to-day stuff. He’s the designated driver still.

Despite once active networks as keen lawn bowlers and

members at the RSL club, now there are barriers to them

enjoying these activities. They are currently working out

whether their Crows membership will be too much trouble

to manage this year. They do enjoy seeing their daughter and

grand daughter (a trainee nurse) who live locally and speak

with their son, who lives in Melbourne, weekly.

KAREN AND LOU Karen and Lou got together three years ago. Karen is an

environmental law professor. Lou was an accountant for

community organisations and an avid cyclist. He also ran a

successful bike and kayak hire business, and a love of the

environment is something that he and Karen share. In 2007

Lou had testicular cancer. In January 2011, he was diagnosed

with leukemia and spent much of the year in and out of

hospital. Karen took leave from work in Sydney to care for

Lou and has just started a new job now at UniSA. She feels

like she’s lost a lot of her professional network in the past

year. Lou is starting to get back on his feet health wise. He

attends a Men’s Group for people with blood diseases which

he finds helpful, and has a friend who is two weeks ahead with

the same condition who he gets a lot of support and comfort

from. Lou would like to do some worthwhile work but he’s not

sure what yet.

PAGE 65PAGE 64

IRENE Divorce changes things. After having a 3 bedroom house,

caravan and holiday home, Irene now lives in a 1 bedroom

unit. Her divorce was 30 years ago and much has changed

since then. Irene describes her life as anything but over: “I’m

happy with my life, my friends and volunteering.”

Irene’s world is centred around spending time with and

keeping in contact with different groups of people. She speaks

to her son Michael on the phone several times per week,

volunteers 3 days per week at a local senior’s centre and

catches up with neighbours on a daily basis. She also keeps in

contact with friends and family via email.

Irene keeps up with what is going on around her. She does

this by watching the news nightly, checking the news online

and listening to talkback radio. Once a week, she and her

friend Judy travel across Adelaide via buses to different

shopping centres. She loves to get out and about.

Learning new things and sharing skills features strongly in

Irene’s life. At the moment the focus is card making. She has

friends who are also interested in this. Irene buys magazines

and scans the internet for new ideas, products and ways of

doing things.

Good health and being independent are really important to

Irene. She cared for her parents in her home for 13 years and

has an understanding of what that is like. She talked about

there being a positive side as well as a negative one to caring.

Irene plans to find a nursing home to move into if she is

unable to live at home alone. Irene wonders about the impact

of her health on plans that she has for the future - to continue

volunteering, maybe going on an overseas trip and to continue

getting out and about.

EDDYEddy lives in a spotless two bedroom independent living unit.

He and his wife moved into the unit 14 years ago, and he now

lives there alone after his wife died a few years ago. Eddy had

two heart operations when he was 58 which meant he had to

retire. He has a package of services, which includes cleaning

and cooking help, provided by a girl called Sammy. Eddy is

fond of Sammy and “treats her like a grandchild.” He likes

planning his evening meals and doesn’t want to have meals

at the Citizen’s Centre because it would make him “lazy.” He

is also very handy- his most recent project is making folding

wooden card tables. Eddy shows us a trophy that he won

for bowls at a family competition last year, but tells us he

doesn’t really like bowling because you have to go the club

Appendix

“every day.” Eddy lives on the pension and keeps an Excel

spreadsheet of his expenses, which is detailed to the level of

yearly expenditure on clothes and Christmas dinner. Eddy’s

daughter Mandy is an experienced nurse, and comes over for

dinner once a week. He says, “I don’t know what I’d do without

her.” He has a son who lives in Adelaide, but he doesn’t drop in

much as much. Up until this year, Eddy has taken the girls at

the chemist out for dinner once a year. He mentions one friend

he’s fond of - who he helps with financial advice- but says that

friends are only good if you do something with them: “playing

ludo or something- not just sitting around.” “Getting out” is

important to him: “sitting wrapped up in your chair is why

people get depressed.”

PAM & EDDIEPam and Eddie found love on the golf course 12 years ago and

they married soon after. Eddie’s first wife passed away after

a battle with cancer a few years prior to that and Pam’s first

marriage had left her unhappy and unfulfilled. She left to move

in with Eddie.

Around 5 years ago Pam was diagnosed with Alzheimer’s

Disease. Every aspect of Eddie’s life revolves around caring

for Pam. Pam’s scoliosis and decreasing ability to effectively

communicate mean they no longer go to the golf club or

dancing - “We’ve lost connection with all our friends”. Eddie

tends to finish Pam’s sentences. They go to the Para Hills Club

Monday’s and Tuesdays for a few hours. Eddie rarely leaves

Pam’s side.

Eddie also has his own health problems. He has a severe

tremor from a work place accident years ago that has left him

unable to do things like write or prepare food. They get meals

on wheels a couple of times a week and they have a hot meal

at the Para Hills Club a couple of times a week.

For a couple of years now they have received services as

part of a package of care from Helping Hand. 3 mornings a

fortnight a carer takes Pam out to give Eddie some respite. He

usually does the washing, shopping or other things around the

house. A cleaner comes in weekly to take care of the basics

and fortnightly a gardener helps out with cutting the lawn and

tending the front yard - he also makes time for a cup of coffee

and chat with both Eddie and Pam.

Eddie focuses on making the most of life for Pam sometimes

makes it difficult for him to sleep. He worries alot about the

impact he has on the desire or willingness of Pam’s children

to spend time with their mother. Eddie just wishes they would

spend some time with her, take her out every now and then.

He also worries about what might happen to Pam if

something happens to him. A week ago Eddie was rushed to

hospital with pains in his chest. Pam had to come along in the

ambulance. Eddies not sure how it was arranged but Pam’s

son came and collected her. Eddie once promised Pam that

she would never go into a nursing home. He is desperately

trying to avoid this.

MURIEL AND NORMMuriel and Norm have been happily married for around 40

years, live in a nice house, and have a big family of children,

grandchildren, brothers and sisters who often pop in. They

love travelling, and have 2 big maps in their house with pins

showing the places they’ve visited - one of Australia which

they toured in their caravan, the other of the world. Norm

retired early 22 years ago when he developed a degenerative

bone disease which made it harder for him to get about.

Muriel has been caring for him since then and they’ve had to

adjust everything they want to do to whatever pace Norm can

manage.

Last year Norm had a stroke and heart surgery, and since has

needed far greater levels of care. Muriel has tried to make

everything easier, but is stressed by all the extra stuff she has

to do. They managed their first caravan holiday in a year last

week - to McLaren Vale. Norm feels bad that he cannot share

the driving with Muriel anymore, but she seemed happy to

have managed to make the trip at all. They spent the weekend

with her extended family - 3 sisters and their husbands- who

are all getting on in age but still attend the four annual get-

togethers.

Their big love in life is travelling and meeting new people -

they tell many happy stories of making new and temporary

connections on all their travels. They don’t have the social life

that they would like - they don’t often get out in the evenings

though Muriel would like to - and they go mainly to the casino

because its the easiest and safest social option for them.

CATHYCathy ended up for a time helping out a friend, Evelyn, now

aged 92. However, she became stressed out by the experience

which eventually became more than she could cope with.

She met Evelyn many years ago through a distant connection

who introduced them since both are British in Adelaide. For

many years she kept in touch with Evelyn via social situations,

mostly around a shared love of music.

As time went on Cathy could see that Evelyn, who has no

family in Australia, was becoming increasingly frail and

isolated and needed more and more help. Unfortunately she

would not allow strangers into her home - her “haven”. The

only people that Evelyn was prepared to call upon for help

were Cathy and one helpful neighbour.

Cathy found herself driving Evelyn to meals twice a week,

taking her home-prepared food, helping her with shopping,

banking, numerous medical appointments, liasing with her

daughter and her GP, and being almost her only point of social

contact. During this period Evelyn refused to consider asking

for any of the help with shopping or cleaning etc to which

she would have been entitled. When Cathy suggested any

kind of change involving outside help, Evelyn would either

cry and become very distressed and short of breath, or else

go completely silent and freeze Cathy out. Cathy felt that she

was being manipulated into giving so much time to Evelyn. An

additional difficulty was that Evelyn’s hearing had deteriorated

so much that she couldn’t hear the phone or door bell ring.

As a result, Cathy sometimes feared that Evelyn might have

fallen, or could even have died. This possibility always worried

Cathy when she went away on holiday. A couple of times it

became necessary to break into Evelyn’s house to check if she

was still alive, only to discover that she just hadn’t hear them

at the door. Despite Cathy and the neighbour’s best efforts

Evelyn ended up so malnourished at times that she had to be

admitted to hospital, but each time she was discharged with

no additional support and the pattern that got her there was

repeated.

Eventually Cathy went away for a long stretch of time and

during her absence the neighbour managed to persuade

Evelyn to accept some other help. Now she has people from a

local aged-care agency to bring her to the lunch place where

she goes five days a week. A nurse also visits every morning

to check up on her and help her with taking medication. Cathy

seems very relieved to be free of the full responsibility for

Evelyn, and now sees her more occasionally and in a much

more social role.

PAGE 67PAGE 66

JESS DE CAMPOSOCIAL SCIENCE HATWhen I got the job at RR, I explained to

friends and family that it was all about a

new way of getting ideas to address big

social issues: I’d be asking rather than

telling people what they need more of.

The response to this was: ‘Of course.

That makes sense!’ Asking people who

care or are cared for what’s hard and

what’d make life better- it sounds

pretty sensible.

But I don’t think I realised what genuinely

working with people meant until I started

at RR. It means standing outside Woolies,

sharing cups of Greek coffee, helping

CHRIS VANSTONEDESIGN HAT (CO-LEAD)Being let into homes and lives is always

a privilege. The warmth with which

people shared time, stories and tea has

been elevating.

This is the third project I’ve worked on

to improve outcomes for ‘oldies’. Each

with a new team and fresh perspectives.

This feels like the first to get close to the

complexity of caring.

My biggest contribution to this report

has been wrestling the opportunities.

They should be simpler and clearer than

they are, but by Round Four it became

apparent that opportunities to promote

great living are, inconveniently, nearly

everywhere. The next challenge for this

project is to find the best place to start..

SARAH SCHULMANSOCIAL SCIENCE HAT (CO-LEAD)Novel. Surprising. Challenging. Fun.

That’s what it’s felt like to shift from

Working Backwards to facilitating others

to Work Backwards. When Chris and

I first moved to Adelaide to build the

Radical Redesign Team, it was just us.

A few months later, we added Carolyn

to the team - then a secondee from

the state’s child protection agency and

now the Director of Family by Family.

DAN MOHR

BUSINESS HAT“...radical redesign, ey?”

Look & Listen - A myriad of bits to learn

or share that then thicken and lead to

an aha moment: the one highly relevant

line in a research paper, the one crucial

variable in a HACC formula, the moment

of silence in a story.

Interdisciplinary - The wealth of know-

how within the team enriches and

complicates. My inner homo economicus

expands and becomes human again. My

left and right brain play high speed ping

pong of understanding and creating.

Rapid & Precise - Put my best effort into

fleshing out ideas quickly. Make ideas

tangible. Then just start from scratch

again if they don’t fly.

Now I can’t wait to start turning the

bittersweet emotions of aha moments

into solutions that suit people and matter

to them.

Reflections from the team

She transformed our thinking and

whet the appetite - how could we be

more systematic and intentional about

building teams? Instead of trial by fire,

how could we embed a trial-and-error

mindset and enable people to problem-

solve with people, from the ground-up?

Doing so has meant codifying what we

know, figuring out how to transfer our

experiences, and letting go. Ultimately,

we want the new Radical Redesign Team

to take ownership over the project, and

to apply the methods to other social

challenges. That means as we move

forward with the project and enter the

Create phase, I’ll have to keep practicing

stepping back, and helping curate an

environment that’s all about making

ideas tangible and testable. No doubt it

will be novel, surprising, challenging, and

fun.

people prune fruit trees, sitting with

people who are very upset and seeing

their eyes light up talking about family

members who’ve drifted out of their

lives. It’s doing your best to really listen to

peoples stories and what they’re saying.

It means taking off your professional hat

and trying to understand how day-to-day

stuff is for people, before you think of

what could be. People have been warm,

honest, candid and we’ve been privileged

to be invited into their home and lives.

Appendix

ADELE LIDDLE COMMUNITY HATIt’s exciting to visualise our next stage,

which will see us building on hunches,

testing findings, revising what we

think we know about relationships,

and rethinking new ways to treat and

appreciate each other. No doubt once

more massively frustrating, messy,

insightful, somewhat glorious.

JENNA ROMAINESECONDEEIt’s exciting, it’s exhausting, it’s

sometimes frustrating! We work really

closely together and we are learning to

challenge each others ideas more and

more everyday. I am really enjoying

the structure of learning and working

in parallel. Conscious iteration and the

intentionality behind every step in our

process has really pushed us to produce

better work.

The RR process has allowed the space

and given me the tools to do much

more than just scratch the surface when

spending time with people. Spending

time with people in their own context

has enabled us to peer into their lives.

We have got to understand what their life

is really like, what they do, who they do it

with and why they do it.

SANDHYA SHARMADESIGN HATMoving to Adelaide to be a part of the RR

Team feels like, in the words of Beryl and

Jon, being in the right place at the right

time. It’s been surprising, interesting and

touching to be let inside people’s lives

and have the time and space to hear

their stories in their own words.

The best part is these stories don’t just

end with this report. Instead they’re the

starting to point to the next phase where

we will leap into making things tangible.

We’ll prototype, test and repeat until we

find something that resonates and has a

positive impact on people’s lives.

Learning what this thing called ‘Social

Innovation’ is and extending my skills

as a thinker, do-er and designer is an

amazing added bonus.

SUSAN BUTLERDESIGN HATThe RR Team experience is a bit like

lasagne - all the component parts alone

are a little odd, but put them all together

and you get tasty goodness. The team

around me is a bit like the sauce, running

through everything with some spice, and

stickiness. The project, curriculum for

learning and the day to day bits are the

layers of pasta, giving form. The people

RYAN HUBBARDDESIGN HATTACSI’s really ahead of the game. No

one else in the world is working in this

way on this scale. We have a great crew

of people on the design team, and it’s a

pleasure to be part of it.

We’re about to get into making things

real, and that’s always really exciting. We

get to talk to people and have all of these

ideas, which is great fun, but this next

phase is where the rubber meets the

road and we prove whether our ideas are

any good. It’ll be really rewarding to see

tangible results from our work.

SHOUT OUT FROM THE TEAMSpecial thanks to David Kelly for your

warmth, insights, advice and charm.

we meet are the filling - without them

the whole dish would be tasteless - it’s

the people that give the real texture. A

delicious combination - I can’t wait for

dessert - I have a feeling it’s going to be

tiramisu!

One of the most surprising things I’ve

found has been just how emotional it’s

been - from the sadder stories to the

brave and hopeful tales. Joining the

project I expected to get to know many

people, but I never expected to care this

much about them. I thought I’d be more

detached, but all the moments stay with

me and driven me on to discovering

better stuff. And that’s a good thing.

PAGE 69PAGE 68

Get Into Reading by The Reader Organisation (UK)

thereader.org.ukUKOpportunity 1: Shaping minds

WHAT IS IT?The Reader Organisation (TRO) supports regular Get into

Reading (GIR) groups- in residential care homes and older

people’s houses. Facilitators choose books that explore

personal challenges like mood swings or low self-confidence.

About 70 GIR meet once a week all over the world, including

Australia.

WHAT CAN WE TAKE AWAY?How to create and grow alternative kinds of therapy.GIR is a form of bibliotherapy that is more generative than

traditional book clubs where people read selected books in

their own space. GIR facilitators guide people into reading

meaningful literature outloud in an active and social way.

Members of reading groups noticed how the weekly get

togethers improved their wellbeing. Their mood improved and

they felt more inspired in planning their days. Their cognitive

abilities to recollect and concentrate improved as well.

Jämlikhet, Assistans och Gemenskap (Equality, Assistance and Community)jag.seSwedenOpportunity 7: Diversifying help networks

WHAT IS IT?JAG - Swedish for “I” is run, i.e. staffed, by and for people with

multiple physical or intellectual impairments. Members hire

their own care “personal assistant” (PA) and network through

JAG.

The JAG cooperative has 400 members in the Stockholm area.

Together they employ some 3,000 personal assistants (PAs).

About 40 persons work directly for JAG. The JAG cooperative

disposes of nearly 70 million Euro (c.$100 million) per year

from state funded personal care budgets. Members use it

to organise their personal assistance and to resource JAG

support staff. Personal assistants come from the circles of

family, friends or JAG’s recommended professional carers.

WHAT CAN WE TAKE AWAY?How to blend care from family, friends and professionalsJAG is a model that enables members to build their own care

networks with advice from other co-op members. They pick

suitable assistants and pay them from their personal budgets,

which they spend at their discretion. That means members

can use the funds to support their friends and family for their

efforts or attract PAs from outside their personal network. The

personal blend of PAs, friends and family has been working

for members for over 15 years.

Evaluations suggest that the quality of life is higher than

in institutional settings at lower cost. Whether the model

can inspire solutions from the context of disability care in a

different political context remains to be seen.

International examples

Appendix

Planned Lifetime Advocacy Network (PLAN)

plan.caCanadaOpportunity 3 - Activating Family & Friends

WHAT IS IT?PLAN is a network led by families who want to secure a future

for family members of all ages living with disabilities. PLAN

was founded by parents who acknowledged that one day they

would need to pass on their caring responsibility to someone

else. It operates throughout Canada and has inspired over 40

similar organisations across the world. PLAN wants everyone

to have access to a good life: (1) friends and family who

love them, (2) a place of one’s own, (3) financial security, (4)

participating in decision making, (5) and the ability to make a

contribution to society.

WHAT CAN WE LEARN?How to build capabilities through trainingCourses and workshops spread the best ways to develop and

maintain a personal network for children with disabilities, and

teach how to structure finances and wills.

How to build connections through new rolesCommunity Connectors are the linchpins who help families to

create and expand their networks. They help family members

to make connections with new people. Once these friendships

are built, the Community Connector formalises a group of

three to five people who help ensure a safe and secure future

for their child or sibling.

How to maintain connections onlineTyze Personal Networks (tyze.com) is a social networking

service that revolves around a specific person and their

network. Members use shared calendars, goal and task lists,

stories and photos to build community, share information and

coordinate support for someone needing care.

It remains to be tested whether interactions and supporting

systems used by PLAN can be built that help plan a good life

for people in late adulthood.

WHAT CAN WE TAKE AWAY?Sustainable Business Model. Members contribute to PLAN in kind as well as financially. All

member families pay the network a small annual subscription

fee of $29 to use general planning tools and to be connected

to other families. Families that tap into personalised services,

such as the Community Connector, contribute through higher

valued Lifetime Memberships. Participants of specific courses

pay fees that recover the running costs. PLAN’s business

model is an example of a network people are willing to

support financially in return for the value that they receive.

PAGE 71PAGE 70

The Cohousing Company

cohousingco.comLocation: USAOpportunity 4 - Starting Relationships

WHAT IS IT?The Cohousing Company (“TCC”) is an architecture firm that

specialises in helping people of all ages design and build their

own cohousing communities. It acts (1) as the facilitator of

the participatory design process that enables people to build

the community together “not brick by brick, but decision by

decision”, and (2) as advisor on building and architectural

issues including on how to design sustainable and affordable

houses.

TCC has advised over 50 cohousing communities across

the US (5 specifically for older residents such as Silver Sage

Village in Boulder, Colorado).

Cohousing communities are similar to other types of

intentional communities like co-ops or communes but differ

in that common areas, such as kitchen or gardens, are

interspersed among private homes. The aim is to invest in

a socially rich and interconnected community where people

are happy to give each other a helping hand. They are self-

managed with a non-hierarchical structure and consensus

decision-making by all residents.

TCC’s approach draws from the cohousing communities

first designed in Denmark in the 1960s. Communities have

been developed by local people in many countries, most

in Northern Europe. There are more than 300 cohousing

communities (about 70 mixed-generation and 230 senior

cohousing) in the Netherlands alone.

TCC’s services to senior co-housing communities include

specific design features that let people age in their

community, such as barrier-free access, and future-proof

support features, such as common guest rooms for relatives

or nurses to live.

WHAT CAN WE TAKE AWAY?

How to create and build community. Know-how about designing a co-housing development with a

strong community spirit tends to dispersed by word of mouth.

TCC has aggregated its lessons learnt from facilitating the

collaborative development process and created a blueprint. Its

set of interactions has turned diverse groups of like-minded

people into residents that are passionate about having a

community rich in relationships. Our hunch is that a similar

blueprint can be prototyped for the Australian context and be

used to spread co-housing commiunities for older people. We

can learn from examples like Apartments for Life in Sydney.

Sustaining Community. Co-housing communities that endure keep running based on

the principles of their development: decisions by consensus

and non-hierarchical organisation. Residents look out for each

other and help each other to stay in the community for as

long as they wish for. Enduring communities with seniors are

run flexibly as people’s circumstances change. Private homes

and common spaces can be redesigned and paid helpers can

top up help among residents. Yet we wonder whether the

communities can also run on an intergenerational compact

between younger, newer members that can give a helping

hand and older, decorated members of the community who

can contribute in a different way.

International Examples

Appendix

thegreenhouseproject.orgUSAOpportunity 6: Caring Services

WHAT IS IT?A Green House home is an independent, self-contained

home for 6-12 people, designed to look like a private home

or apartment in the surrounding community. Each person

who lives in a Green House home has a private bedroom and

bathroom, opening to a central living area and an open kitchen

and dining area. Elders, as residents are called, share meals at

a common table.

The Green House concept was developed by Dr. Bill Thomas,

an expert on geriatric medicine and elder care, as a model

for residential care that rethinks the philosophy of care,

architecture, and organisational structure of long-term care.

There are 113 Green Houses in 29 states with 227 in

development. Each home is staffed by a team known as

Shahbazim (which is a midwives of elderhood). The staff

has core training as certified nursing assistants and share

personal care, meal preparation, and light housekeeping

responsibilities among their team.

The elders and Shahbazim collaborate to create a daily routine

that meets elders individual needs. If they wish, elders

can help cook, and assist around the home. There is no

predetermined routine. The aim of shahbazim is to facilitate

independence and the ability to pursue individual interests.

WHAT CAN WE TAKE AWAY?How to create caring services Green Houses have clear principles operating in their homes.

[See: edenalt.org/our-10-principles]. The principles put good

outcomes for the elders at the forefront of any interaction.

Green Homes reinforces these values in the daily interaction

through peer observation and feedback. New Shabahzim go

on a short but intense course on the principles, and structured

training on the job with mentor Shahbaz. What if we took

the Shabahz role out of residential settings and into people’s

homes?

Sustainable model for enabling services. The Green House homes model is built around supporting

direct care workers in their interactions with elders. A

clinical support team of nurses, social workers, therapists,

physicians, activities and dietary professionals, and

pharmacists assist the Shabahzim. This reversal of roles with

resources geared towards direct carers creates a model of

high quality care that is sustainable. Shabahzim constantly

learn from mentors on the job, have longer care times and

engagement with elders. This in turn ensures a high quality of

personal care that is financially viable. Turnover of staff is only

10%, which adds to the sustainability of the care model.

Green House Nursing Home Alternative

PAGE 73PAGE 72

What we readABOUT OUTCOMES

Traditionally, medical literature talks

about good outcomes for older people

in terms of having less bad health: less

illness, depression or disabilities,21 or in

terms of being independent.22

In the field of developmental

psychology, outcomes focus more

on social and emotional wellbeing for

individuals: meaningful relationships

and community involvement, making

a contribution, autonomy, control in

decision making and experiencing

positive emotions.23

SO WHAT?The people we met talked about great

living as having friends, being close, and

planning and learning new things. The

literature focuses on good outcomes

for individuals, whilst we think good

outcomes will focus on people’s

relationships and networks, and how

they can grow and develop over time.

ABOUT BEHAVIOURS

George Valliant’s Aging Well emphasises the importance of being

helpful to those around you, and

continuing to make new relationships

while deepening old friendships. It

also highlights retaining your sense

of humour and capacity for play while

accepting the “indignities of old age.”24

Freund and Baltes’s framework

explores differences in people who find

new ways to pursue their interests as

their capabilities change, from those

who forgo goals once things become

harder as they get older.25 Those who

found ways to adapt were more likely

to display attributes the researchers

define as successful ageing, like having

a positive outlook and feeling satisfied

with life.

SO WHAT?What if we can help others to improve

their ability to adapt as they get older

- and how might this help them get to

great living?

ABOUT NETWORKS

Knoke and Kuklinsky introduced us to

multiplexity: where people share roles

within a caring network. More resilient

networks spread caring roles across

more people, creating less pressure

on one person.26 Antonucci’s concept

of reciprocity is also useful: the idea of

both give and take, or a two way street,

within caring relationships.27

SO WHAT?This work helped us to see that we

need to look beyond the core caring

relationship to see what role the

broader network plays.

ABOUT CARING

Michael Fine writes that caring is ‘a

complex cluster of social activities,

behaviours and dispositions.’ Rather

than burden, as it’s often seen, he

says care is a ‘fundamental condition

of human experience.’28 Care comes

from the Latin, caritas, which means

to love. Fine says that rather than

something ‘done’ to you, care should be

defined more broadly, and be a social

process.

SO WHAT?Fine’s work gave us a lens through

which to look at perceptions of care.

Could we see care as a shared activity

rather than unidirectional?

2006-07 of HACC compared with Residential High Care Level. Data

in: Commonwealth of Australia Treasury, 2009, Australia’s Future Tax

System: Detailed Analysis, Vol. 2, p. 634.

17. Access Economics, 2010, The economic value of informal care in 2010,

Report for Carers Australia, p. i.

18. Productivity Commission 2011, Caring for Older Australians, Vol. 1, p. XXII.

19. Australian Bureau of Statistics, 2011, Household Income and Income

Distribution 2009-10, p. 32.

20. Chappell, N.L. & Reid, R.C. 2002, ‘Burden and well-being among

caregivers: examining the distinction,’ The Gerontologist, 42(6).

21. Burgener, S., Twigg, P. & Popovich, A. 2005, ‘Measuring psychological

well-being in cognitively impaired persons,’ Dementia, Vol. 4 (4).

22. Ryff, C. D. 1989, ‘Happiness is everything, or is it? Explorations on the

meaning of psychological well-being,’ Journal of Personality and Social

Psychology, Vol. 57(6).

23. Valliant, G. 2002, Aging Well: Surprising Guideposts to a Happier Life from

the Landmark Harvard Study of Adult Development, Little Brown, p. 346.

24. Freund, A.M. & Baltes, P.B. 1998, ‘Selection, optimization, and

PAGE 75PAGE 74

Freund, A.M. & Baltes, P.B. 1998, ‘Selection, optimization, and

compensation as strategies of life management: correlations

with subjective indicators of successful aging,’ Psychology and Aging, 13(4), pp. 531-543.

Roos, N.P. & Havens B. 1991, ‘Predictors of Successful Ageing:

A Twelve-Year Study of Manitoba Elderly,’ American Journal of Public Health, 81(1), pp. 63-68.

Rozario, P.A., Morrow-Howell, N. & Hinterlong, J.E. 2004, ‘Role

Enhancement or Role Strain: Assessing the Impact of Multiple

Productive Roles on Older Caregiver Well-Being,’ Research on Aging, 26 (4), pp. 413-428.

Ryff, C. D. 1989, ‘Happiness is everything, or is it? Explorations

on the meaning of psychological well-being,’ Journal of Personality and Social Psychology, 57(6), pp. 1069-1081.

Smerglia, V.L. & Deimling, G.T. 1997, ‘Care-related decision-

making satisfaction and caregiver well-being in families

caring for older members,’ The Gerontologist, 37(5), pp. 658-

65.

Stoltz, P., Udén, G. & Willman, A. 2004, ‘Support for family

carers who care for an elderly person at home - a systematic

literature review,’ Scandinavian Journal of Caring Sciences,

18(2), pp. 111-9.

Wright, D. & Aquilino, W. 1998, ‘Influence of emotional support

exchange in marriage on caregiving wives’ burden and marital

satisfaction’ Family Relations, 47 (2), pp. 195- 204.

ARTICLESAhmed, N. & Rees Jones, I. 2008, ‘Habitus and Bureaucratic

Routines: Cultural and Structural Factors in the Experience

of Informal Care: A Qualitative Study of Bangladeshi Women

Living in London,’ Current Sociology, 56(1), pp. 57-76.

Antonucci, T.C., Sherman, A.M. & Akiyama, H. 1996, ‘Social

Network, Support, and Integration,’ in Birren, J.E. (ed.),

Encyclopedia of Gerontology: Age, Aging and the Aged,

Academic, San Diego, pp. 505-15.

Aronson, J. 1998, ‘Lesbians Giving and Receiving Care:

Stretching Conceptualizations of Caring and Community,’

Science, 21(5), pp. 505-519.

Bowling, A. & Dieppe, P. 2004, ‘Thoughts for today: What is

successful ageing and who should define it?,’ British Medical Journal, 331(7531), pp. 1548-51.

Burgener, S., Twigg, P., & Popovich, A. 2005, ‘Measuring

psychological well-being in cognitively impaired persons,’

Dementia, 4 (4), pp. 463-485.

Chappell, N.L. & Reid, R.C. 2002, ‘Burden and well-

being among caregivers: examining the distinction,’ The Gerontologist, 42(6), pp. 772-780.

Cox, E.O. 2006, ‘Coping with late-life challenges: Development

and validation of the care-receiver efficacy scale,’ The Gerontologist, 46(5), pp. 640-649.

Fine, M. 2004, ‘Renewing the Social Vision of Care,’ Australian Journal of Social Issues, 39 (3), pp. 217-232.

Levy, B., Slade, M., & Kavi, S. 2002, ‘Longitudinal Benefit of

Positive Self-Perceptions of Aging on Functional Health,’ The Journals of Gerontology, 57 (5), pp. 409-17.

Lyonette, C. & Yardley, L. 2003, ‘The influence on carer

wellbeing of motivations to care for older people and the

relationship with the care recipient,’ Ageing and Society, 23(4),

pp. 487-506.

Appendix

Bibliography BibliographyBOOKSDurkin, K. 1995, Developmental social psychology: from infancy to old age, Blackwell Publishers.

Emerson, R., Fretz, R. & Shaw, L. 1995, Writing ethnographic fieldnotes, The University of Chicago Press, Chicago.

Fine, M. 2007, A Caring Society? Care and the Dilemmas of Human Service in the 21st Century, Palgrave Macmillan.

Forbat, L. 2005, Talking About Care, The Policy Press, UK.

Friedan, B. 1993, The Fountain of Age, Vintage, London.

Knoke, D. & Kuklinski, J. H. 1982, Network Analysis, Sage,

London.

Pascale, R., Sternin, J. & Sternin, M. 2010, The power of positive deviance: how unlikely innovators solve the world’s toughest problems, Harvard Business Press, Boston.

Piercy, K. 2010, Working with Aging Families, W.W. Norton,

New York.

Seligman, M. 2011, Flourish: A Visionary New Understanding of Happiness and Well-being, Free Press, New York.

Ritchie, J. & Lewis, J. 2003, Qualitative Research Practice: A Guide for Social Science Students and Researchers, Sage

Publications, London.

Ybema, S., Yanow, D., Wels, H. & Kamsteeg, F. (eds.) 2009,

Organizational Ethnography: Studying the Complexity of Everyday Life, Sage, London.

Valliant, G. 1995, Adaptation to Life, Harvard University Press,

Cambridge, Massachusetts.

Valliant, G. 2002, Aging Well: Surprising Guideposts to a Happier Life from the Landmark Harvard Study of Adult Development, Little Brown, New York.

REPORTSAccess Economics, 2010, The Economic Value of Informal Care in 2010, Report for Carers Australia, October.

Department of Health and Ageing, 2003, Review of Pricing Arrangements in Residential Aged Care, Canberra.

Department for Health and Ageing, 2010-11, Report on the Operation of the Aged Care Act 1997, Canberra.

Demos, 2007, Coming of Age. Available: http://www.demos.

co.uk/projects/comingofage/

Government of South Australia, 2006, Improving with Age: Our Ageing Plan for South Australia.

McGrath, D. 2011, ‘Carer support is not only about Respite.’ Presentation to Transforming Respite Summit, Morphettville,

SA.

Productivity Commission, 2011, Caring for Older Australians,

Report No. 53, Final Inquiry Report, Canberra.

South Australian Department of Families and Communities,

2006, SA Carers Policy.

IF YOU WANT TO KNOW MORE ABOUT WHERE THIS PROJECT CAME FROMSchulman, S. and Vanstone, C. (2011), How can we improve outcomes for caring & cared for older people? Ageing Project

Paper 00. Available: http://www.tacsi.org.au/our-projects/

caring/

Schulman, S. and Vanstone, C. (2011), If you could improve outcomes for one group of older people who would it be?

Ageing Project Paper 01. Available: http://www.tacsi.org.au/

our-projects/caring/

PAGE 77PAGE 76

GlossaryBehavioursWhat people say, feel, think and do.

Carer: official definitionsAccording to the National Respite for Carers Program

(NRCP), a carer is defined as “a person who, through family

relationship or friendship, looks after a frail older person or

someone with a disability or chronic illness. Carers look after

these people in the community or in their own homes”

(DoHA, 2006).

Carers Australia definition: Carers provide unpaid care and

support to family members and friends who have a disability,

mental illness, chronic condition, terminal illness or who are

frail aged.

Carer: Radical Redesign definition 1) A family member, friend or neighbour who provides

assistance in the provision of support (physical, emotional,

social or other) to another.

2) Being there for another person - playing a role and

contributing to great living.

Cared forPerson receiving support (including physical, emotional or

social support) from another.

Co-designWorking with people, practitioners and policymakers to

develop new kinds of solutions.

Consumer Directed Care

A system where care recipients and their carers have

greater control over the design and delivery of the care and

services they receive. Consumers are allocated a budget

and are able to ‘buy in’ services that meet their care needs.

Internationally there are several models currently in practice

with varying guidelines and boundaries around the amount

and management of funds and the types of services eligible to

be purchased.

DevelopmentalThe process of growing, progressing and intentionally

changing over time.

EthnographyExperiencing a day in the life of an individual, caring

partnership, group and culture.

HACC (Home and Community Care Program)Federally funded initiative. Local government, community

organisations, religious or charitable bodies, state and

territory government agencies and private (for profit)

organisations are eligible to receive HACC money to deliver

services. The HACC program supports older Australians,

younger people with a disability and their carers.

InteractionEngagement of individuals or groups with services,

programs or each other.

OutcomeThe end results; what changes for people and for systems.

PrototypingTrying out new ideas that have been co-created with carers

and those they care for.

Positive deviants

Individuals or groups of people who are doing well or thriving

despite the situation they are in. Characterised by specific

behaviours or sets of behaviours.

SolutionsA set of interactions and experiences that spread as

principles, platforms, organisational models, and programs.

ThrivingIndividuals who are thriving are actively developing

aspirations, capabilities, relationships and achievements.

They have lives where they feel good and in-control.

Working Backwards approachProcess used by the Radical Redesign team. Draws on

design thinking, social sciences, community development

and business to create solutions that enable change in

peoples lives.

Appendix

SOUNDING BOARD

Thanks to the Sounding Board for being critical friends.

Brenton Caffin Chief Executive, The Australian Centre for Social Innovation

David Kelly Deputy CEO, The Australian Centre for Social Innovation

Michael FineAssoc Professor and Head, Department of Sociology,

Macquarie University

Jane MussaredGeneral Manager Innovation, ACH Group

David CaudreyExecutive Director, Disability, Ageing and Carers

Karen GroganChief of Staff, Mark Butler MP

Megan CorlisDirector of Research & Development, Helping Hand Aged Care

Peter SparrowChief Executive, Carer Support & Respite Centre

Peter TsokasChief Executive, Unley Council

John HarryChief Executive, Salisbury Council

Greg MackieExecutive Director, Ageing SA Health

PEOPLE

Thank you to the people in Unley and Salisbury for letting us into your lives.

Glad

Leon

Bob and Jean

Norm and Muriel

Julie

Soula, Mick and Thia

Helen

Lou and Karen

Eddie and Pam

Susan, Wayne and Naomi

Eddy

Joan and Don

Pat and Dave

Beryl and Jon

Barbara

Mike and Liz

Eileen

Irene

Eleanor

Lance and Meredith

Helen and Jayne

Suzie

Deidre

Mary Skaltas

Contributors

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SERVICES

Thank you to the following people and services for your willingness to have us hang around and for being open in sharing what you do.

From Office of the Ageing, Department for Communities and Social Inclusion:Christopher Birtwistle-Smith

Myrana Wahlqvist

Lisette Clairdge

UnleyFranco Parenti - Aged Care Alternatives

Deb Oliver - Unley Council

Celine Luia - Unley Council

Chris Murray - Unley Council

Unley Council Home and Community Care team

Luke Say - ECH Inc.

Tracey Davis - Mental Health Coalition of SA

Mandy Toczek McPeake - Manager Carer Services,

Carer Support

Donna Musarella - PA to CEO, Carer Support

Mel Burge and Anne Higginson - ACH Group ‘Wyatt Holidays’

Antonietta Cardinale - Ethnic Ageing Officer,

Co-ordinating Italian Committee Inc.

Marjon Martin - Community Centre Co-ordinator,

Adelaide City Council

Kate Grivell - Community Centre Co-ordinator, Unley Council

Rima Chahoud - Team Leader Respite,

Mental Illness Fellowship

Simon McMahon - Programs Manager Respite,

Mental Illness Fellowship

Maureen Lewis -Team Leader of Family Support Services,

Mental Illness Fellowship

Ben Heyward - Program Manager for Education Awareness

and Training, Mental Illness Fellowship

SalisburyMaria Ross and Team - Northern Carers Network

Sue Phyllis - TAFE SA

Lyndal Gerrard - Access To Home Care Adelaide Metro

Pam Pindral - City of Salisbury Healthy Ageing & Access

Division

Craig Oswald - ‘The Shed’

Shannan Davis - ‘Gone to Seed’ Gardening Project

Bev Brooker and Team- Home Support Service

Robyn Mercierre and Team - Jack Young Centre and the Para

Hills Centre

Ashling O’Boyle - Living Well Program (ECH and City of

Salisbury)

Gail Sloane - Lyell McEwin Hospital Discharge Office

Megan Corlis - Helping Hand Aged Care

Sue Leckie - Northern Collaborative Project

Lui DiVenuto - Eastern Collaborative Project

Contributors

Appendix

We love feedback!Thanks so much for reading this report. Like versions of great living we discovered, we want this document to improve and evolve as more people add their perspective and insights.

Please share this report in any way that works for you, and feel free to use the questions below as discussion points. We’d love to hear about what’s been useful, and any questions the report has raised for you: in your work or current life situation.

Here’s some discussion starters. More information and opportunities to contribute your thoughts can be found at: tacsi.org.au/caring

• Which opportunity area is most exciting? Why?• Do you disagree with any of our findings? Tell us more.• What are some of the challenges or barriers we

haven’t anticipated?• What have we missed? • Or perhaps you have stories or ideas to support

our learnings? Please share.

Send us an email at caring@tacsi.org.au

People of all ages will live better lives when we succeed in bringing elders back to the heart of our society.

U.S. News and World Report, “The Greening of Aging.” Available:

http://www.usnews.com/usnews/biztech/articles/060619/19leader.htm

The Australian Centre for Social Innovation exists to identify and support the innovative ideas, methods and people that will contribute to and accelerate positive social change. tacsi.org.au

TACSI’s Radical Redesign team blends design thinking, policy thinking, social science and business to solve social problems and demonstrate new ways of working with and for social services. tacsi.org.au/design

TACSI’s Ageing & Caring project aims to improve outcomes for older people in caring roles and relationships. The project brings together TACSI; South Australia’s Office of the Ageing; the City of Salisbury; the City of Unley; ACH Group, and Helping Hand Aged Care. tacsi.org.au/caring

Contact carers@tacsi.org.au

© The Australian Centre for Social InnovationPublished February 2012Under Creative Commons Attribution 3.0Please share

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