Alzheimer100
How Alzheimer100 worked
Dott 07 asked service design firm thinkpublic, led by Deborah Szebeko, to work with Alzheimer’s Society branches throughout the North East to investigate the everyday problems experienced by Alzheimer’s patients and carers, and service providers. thinkpublic helped people record their experiences; they used film, diaries, interviewed one another, made prototypes, and drew. From these activities emerged a long list of common challenges faced by people during their journeys through dementia.
The key challenges identified were:
- Social isolation, both of people with dementia and their carers
- Lack of public awareness and the stigma attached to the subject
- Difficulty in navigating the wide array of support services that exist
- Tendency of carers and services to be over-protective of people with dementia
- The long hours worked by carers on their own and without support.
Case study 1 – Bill
Bill, 56, was an engineer for the whole of his working life. He lives with his wife, Susan, in the city. His two children live a 15-minute drive away.
His story: ‘My life’s changed a lot over the past couple of years. Being diagnosed with Alzheimer’s means I have to rely on my family much more. I’m lucky that I have a good group of friends – at first it was a bit strange, but they’re beginning to understand that I’m still me.
‘One of the hardest things for me was losing my job. Things that I was doing every day I just couldn’t remember. This meant we lost an income and went on disability allowance, but what amazed me most was how much I missed my workmates.
‘I’ve more time to enjoy my hobbies, and I’ve also been introduced to other groups in similar situations to me by my GP. The fun and humour of the group get me through the tough days.
‘I couldn’t have got through this without Susan. Sometimes we argue and get frustrated, but we both support each other and that gets us through.’
Case study 2 – Betty
Betty is 80 and lives alone – her children live a long way away. She is a retired schoolteacher and her husband Alan passed away 10 years ago. Betty was diagnosed with Alzheimer’s two years later and is now in the later stages of the disease.
Her story: ‘I felt very isolated when I was diagnosed with Alzheimer’s. My family wasn’t around me and I wasn’t referred for support by the doctor. For a few years I felt very lonely – I had nothing to do and no one to see. All I thought about was the past, which made me feel content. I started to look for my old home and my neighbour says I spent hours searching.
‘I now attend a day club where I have lunch and have made new friends. I always feel safe there, even though I can’t remember everyone’s name. It’s good to talk to people: I talk about my old life, my family, where I was brought up. My neighbour says that I don’t wander as much any more.’
Case study 3 – Margaret
Before Margaret, now 72, married her husband Howard, she worked at her village bank. She then had three children and gave up work to look after them and the family home. Margaret’s children have since grown up and left the area and she has been diagnosed with vascular dementia.
Her story: ‘I went to see a consultant who diagnosed that I had a “memory problem”. A memory problem? Everybody my age starts to have a bad memory!
‘Howard keeps saying that I’m forgetting things, but I don’t know what the fuss is about. He says that we need to tell the children, but what’s to tell them? We can look after ourselves.
‘I used to host afternoon tea for the Women’s Institute every week, but I’m too busy at the moment. Howard says that I should be seeing people more – he keeps talking about a day club that I should go to. Day club? I’m not old enough for that yet!’
Case study 4 – Johnny
Johnny is a 73-year-old former sailor whose one son lives abroad. Shortly after Johnny was diagnosed with dementia, his wife Mary died.
His story: ‘I miss Mary so much. I didn’t realise how much I relied on her. I’m so confused now. I can’t even remember when I have a doctor’s appointment, let alone get there.
‘Luckily, I now have someone to remind me about appointments and a volunteer who accompanies me. They also attach notes to household objects to remind me about engagements and to prompt me to take my medication.
‘I have also been introduced to a volunteer service that sends people to visit and check that I am well.’
Proposal 1: Dementia Adviser Concierge Service
One of the key challenges faced by people when they first discover they or a loved one may have dementia is the sheer complexity of support services and information available. A co-design workshop led by thinkpublic concluded that it would be advantageous if there was a key person to help guide people through the early stages of dementia.
Proposal 2: TimeBank for volunteers
One way to reduce individual caregiver stress is to spread care between more than one person. One theme to emerge from Alzheimer100 was that friends and family often want to help but don’t know how. With ‘time banks’, mutual volunteers help each other to remain independent. Volunteers earn and pay ‘time credits’ through the scheme for giving and receiving non-medical services such as shopping, friendly A visits, bill-paying, hospital visits, home repairs, walking clubs, support groups and self-help courses. For the Dott 07 Festival, Dott teamed up with TimeBank to demonstrate how a service for a different group of people works – in this case, refugees and their mentors. The service, called Time Together featured mentors and mentees from the North of England Refugee Service in Newcastle and Sunderland.
Time Together works as a three-tier system whose staff use the ‘Time Together Tool Kit’. As a poster at the Dott 07 Festival boldly asked: ‘Wouldn’t it be great if we had a Time Together for carers?’ Volunteer researchers from the Alzheimer’s Society solicited feedback from visitors on how such a service should work if one were set up for volunteers to share some of the load of carers of people with dementia.
Proposal 3: Dementia Café
Another co-design workshop discussed the stigma attached to the subject of dementia, and how difficult it is for people with dementia or their carers to talk openly about the subject. Dementia needs to be spoken about openly in the community, and people with dementia need to be able to meet other people in a social space where they can talk and have fun. It turned out that the prototype of an answer to this need already exists in the form of the Dementia Café set up and run by volunteers in North East England.
Proposal 4: Wandering Path (Equal Arts, Shadon House)
Steel picket fencing and grey concrete are bad for morale and do little to stimulate the imagination. And yet many of the institutions for carers or people with dementia are just this depressing. Equal Arts, a foundation that enables older people to be involved in arts across the North East, plans to create a series of ‘wandering paths’ through the grounds of Shadon House, a dementia resource centre in Gateshead. Safe wandering can be of huge benefit to people with dementia – but too often, they encounter locked doors or are told to sit down. Artists and horticulturists are beginning to develop plans with the involvement of older residents, care staff, families and the wider community.
What next?
The Dott 07 team was inspired during the Alzheimer100 project by how much people with dementia, and their carers, do to support each other. That said, the project revealed new opportunities to improve peoples’ lives in practical ways. Our project partners (below) will develop these ideas, presented at the Dott 07 Festival, in the coming months.
Alzheimer’s Society
The UK’s leading care and research charity for people with dementia, their families and carers.
Years Ahead
The North East regional forum on ageing.
Time Bank
A national charity that inspires and connects people to volunteer in their communities.
thinkpublic
London-based design firm specialising in user-focused design.
Dementia Café
A site where those involved with dementia can share experiences.
Equal Arts
information@equalarts.org.uk
Fact sources
1. Profile of Informal and Family Caregivers, Bohse and Associates
2. Alzheimer's Society
