5 Steps to Living Well with

Dementia

in South Tipperary

Genio/HSE funded project

www.southtipperarydementia.ie

The process...

ConsortiumDr. Caitriona Crowe, Consultant in Old Age Psychiatry & Project Lead

Noel Maher, Clinical Nurse Specialist in Old Age Psychiatry & Deputy Lead

Chris Rush, Person with DementiaMarian Staunton, Person with DementiaMarie Ryan, Person with DementiaHelen Jenkins, CarerNan Hackett, CarerMary McGinn, CarerRichie Molloy, The Carers AssociationMartin Quinn, Muintir na TireJulie Whyte, Community and Voluntary ForumCaitriona Lavelle, The Alzheimers SocietyDr. Damian Sharpe, General PractitionerEsther Butler, Director of Public Health NursingAnn-Marie Slavin, Public Health NurseDr. Christina Donnellan, Consultant in Geriatric MedicineDr. Isweri Pillay, Consultant in Geriatric MedicineCatherine Sheehan, Clinical Nurse Specialist in Old Age PsychiatryElaine O Donnell, A/Clinical Nurse Specialist in Old Age PsychiatryAnne Quinn, Advanced Nurse Practitioner in DementiaSimone McGoldrick, Occupational TherapistCáit Mackey, Occupational TherapistBridget Farrell, HSE Manager Co-Ordinator of Elderly ServicesDi Murphy, HSE Home Help Co-OrdinatorEmma Moloney, Social Worker

We wanted to transform the life

experience of people with dementia

and their families in South Tipperary.

Aim

We consulted widely

– People with mild to moderate dementia

– Past carers of people with dementia who had died

– Carers of people with mild dementia

– Carers of people with moderate dementia

– Carers of people with severe dementia.

0

5

10

15

20

25

30

35

Happy to care Pressurised

into carer role

Benefits

outweighed

the sacrifices

Exhausting Advocacy

challenging

Feeling alone Worry about

end of life

How it feels to be a carer of someone with dementia in South

Tipperary.

We found that....

� The majority of our carers are spouses, living alone as a couple

(88%)

� Half are over the age of 65 years (52%).

� Most carers are caring for a single individual (89%) and half had

been carers for more than 3 years.

� 10% were caring for more than 10 years

� Most (88%) find the memory loss of dementia difficult to cope

with.

Carers said.....

• Most (74%) had considered a nursing home admission in

future, as the disease progresses.

• Half had either refused to take a loved one home from hospital

or considered an early nursing home admission because of fear

of managing their loved ones symptoms.

The Structure

• Step 1 Pre-Diagnosis

• Step 2 Early Dementia

• Step 3 Progressive Dementia

• Step 4 Advanced Dementia

• Step 5 Living well and Dying well

Dementia Support Worker Initiative

Goal focused

Special support

On verge of placement

Crisis support

One off day off

Respite

Hospital v home HospitalHome

Individualised supports

Person

Family

Needs

Crisis Response

Ellen’s story

Crisis minimization

Wandering

Incontinence

Night Wakening

Single point of contact

Flexible

Non-bureaucratic

Responsive

Clinical Nurse Specialist in Dementia

• Specialist dementia knowledge

• Clinical experience and expertise

• Explores and identifies needs

• Provides specialist interventions

What Services Carers felt were most useful to them

0 10 20 30 40 50 60 70

Home help

Genio home based respite

Day care centre

Alzheimers society day care

HSE respite

Home care packages

The carers association

More information

Genio crisis intervention

Le Cairde/ASI

Private home care

Senior alert scheme

Psych of old age

Help lines

Meals on wheels

Geriatrician

Active listening services

Muintir na Tire repair service

OT/Physio/SLT

Elder abuse service

Percentage

Cost effective

• 350 people supported in a bespoke manner = Cost of 3 people

in a Nursing home for 3 years

Quotes

• “the service was of great value to my mother and it was a life

saver for us her family”

• “ it was person-centred and always uplifting”

• “ helpful, friendly, made us feel like it wasn’t hopeless and gave

Mam something to look forward to every week”

• “ I look forward to the day I have the support”

‘Whatever you can do, or think you can, begin it.

Boldness has Genius, Power and Magic in it’.

Thank you.