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What do people really want? meeting the needs of people with dementia and their carers
through technology
Gail Mountain
Director K-T EQUAL
Policy views of the contribution of technologies
A new healthcare delivery model based in preventative and person-centred health care systems. This new model can only be achieved by use of ICT, in combination with appropriate organisational changes and skills (EU Commission, Transformng the EU healthcare landscape towards a strategy for ICT for health, 2006)
Person centred, responsive, adaptable services supported by new opportunities presented by electronic assistive technologies (Our Health, Our Care, Our Say DoH, 2006)
Listen to the Voices of People with Dementia
“I'm not dying of dementia. I'm living with dementia.”
“I want to keep going for as long as I can and when things are difficult I don't want to be left on the shelf or forgotten.”
The differing perspectives of people with dementia and carers
The caregivers have a tendency to emphasise care issues such as management of ADL and IADL and safety....people with dementia report how difficult it is to find something to do, sleep or live with the insecurity that you do not know where you are and what time of day it is. Only a few studies were interested in the experiences of people with dementia.
Topo, P (2007) Technology studies to meet the needs of people with dementia and their caregivers: a literature review. Journal of Applied Gerontology, 28(17).
Understanding the potential of self management for dementia
• In the early stages of the illness following diagnosis
Mountain (2006), Dementia, The International Journal
• Involving both the person with dementia and their carer
• Gail Mountain and Claire Craig have been working with people with dementia to determine the content of a self management programme “Journeying Through Dementia”
What the consultation involved
• Individual interviews with people with early stage dementia and with their carers – interview format decided by the person with dementia (10 interviews conducted)
• A consultation group with people with dementia and their carers over six successive weeks (15 participants)
Twelve self management dimensions were identified
Dimension What it involves
Understanding dementia Full and timely information about the condition and what to expect
Rethinking dementia Dementia as part of a process of change, health, wellbeing and activity, enabling environments
Living with dementia Making the most of routines, memory maintenance
Relationships Building and maintaining friendships, husbands, wives and partners: rediscovering relationships
Keeping mentally well Recognising and overcoming depression, managing anger, managing anxiety
Experiencing well-being Volunteering, hobbies, leisure
Dementia and daily living Using everyday technology, managing finances, home and community safety
More dimensionsDimension What it involves
Keeping physically well Eating and nutrition, sensory impairment, developing healthy bladder and bowel habits, managing medication, sleep, managing fatigue
Building and developing skills Obtaining support to learn new things e.g. using technologies such as computers and mobile telephones.
Keeping connected Maintaining community connectedness, accessing outside opportunities, transport and driving
Maintaining a sense of self Dressing and identity, self-esteem, spirituality, keeping faith
Planning for the future Looking towards and planning for the future
The consultation also offered new insights such as ....
• The feelings that can be triggered through the focus upon carer needs;
• Problem behaviours that tend not to be discussed;
• Managing dementia alongside other conditions
How might technology be used to assist with self management (1)
Self management dimension
What it involves Technology – some ideas
Dementia and daily living
(1) In-home instrumental activities of daily living (IADL); cooking, cleaning, gardening, using phone; home security (2) Community based IADL; using transport, shopping, managing finances (3) Home and community safety (4) Preventing accidents and falls
Commercially available safety devices – fire alarm/ carbon monoxide alertCommercially available reminder systemsLost item locatorVideo phoneSmart phone technologyCombined mobile phone/ GPS technologyDoor alarm
How might technology be used to assist with self management (2)
Self management dimension
What it involves Technology – some ideas
Keeping connected
(1) Maintaining community connectedness (2) Accessing outside opportunities (3) Using transport
Video phoneReminder systemsInternet social networking computer WebcamCombined mobile phone/ GPS technology
Technology across the whole dementia journey
• Early stages: to maintain cognition, orientation and safety, obtain support and for enjoyment
• Middle stages: To compensate for deficits and alert carers, obtain support and for enjoyment
• Later stages: for safety and for enjoyment
Examples of technologies developed to meet the needs of people with dementia
Needs that the device is intended for
Stage of dementia Project title/ description
Reference to work Stage of develop-ment
Prompting ADL sequencing
Moderate/late
Coach device to monitor /prompt handwashing
Mihailidis et al, 2007
Prototype
Safe use of domestic equipment
Moderate Prompting when using the cooker
Wherton and Monk, 2009
Prototype
Following recipes
Early/ moderate Sequencing and prompting
Pigot et al, Sherbrooke University Canada
Prototype
Orientation at night/ prompting
All Nocturnal; Wang et al, 2010 Prototype
More examples Needs that the device is intended for
Stage of dementia Project title/ description
Reference to work Stage of develop-ment
Orientation and targeted prompting
Moderate SMART home technology to provide prompts
Evans et al, 2007; Orpwood et al, 2007
Prototype
Mobile Day Navigator
Early mobile technology to prompt activities, maintain social contacts and safety
Mulvenna and Nugent, 2010
Prototype
Reminiscence,
conversation and
pleasure
All CIRCA (Computer
Interactive
Reminiscence and
Conversation Aid)
Astell et al, 2009a;
2010
Ready for
commercialisation
Meaningful and engaging activity; autonomy, competence and control
All Living in the Moment – games and activities for people with dementia
Astell et al, 2009; 2010
Ready for commercialisation
Living well with dementia
Technology for enjoyment: a new area
Recall and reminiscence e.g. digital story telling
Socialisation e.g. social networking
Comfort e.g. robotic pets
Use of existing technologies; for example digital scrapbooking
I have just recently bought a computer program which will allow me to do digital scrapbooking. This is a wonderful invention for people such as myself who have a short term memory problem. It is easy to use.
It is allowing me to go back to the myriad of pictures I have collected and stored on CDs to select the best for my "albums". Currently I am working on my Alaska album.
The main messages
• The needs of each person with dementia and each carer will be different and will change over time
• The person with dementia will have different aspirations and goals to those of their carer
• There will always be underlying complexity
• The abilities of the person with dementia should be nurtured for as long as possible
More messages
• Technologies are dependent upon associated interventions
• Better design facilitates use
• Requires creativity and openness to learn from people with dementia
• Don’t focus purely on self-care and safety. It’s important to have fun too!!
19
KT-EQUAL – a resource to assist with collaboration and
idea generation
• Collaboration across 7 universities• Commenced in January 2009 and substantively in
October for four years• Led by an interdisciplinary group of research leaders• Recruited staff include research coordinators, a press
officer and a lobbyist
• Get involved by registering at www.equal.ac.uk