Nuffield Council on Bioethics
31 March 2011
We’re all in this together – the impact of Big Society on the care of people with dementia
Claire Goodchild, DH, National Programme Manager, National Dementia
Strategy
(The following are my notes for a presentation given at the Nuffield Bioethics
Council seminar on my very last day of working for the Department of Health.
For more information about my work on dementia capable communities please go to my website www.thehalcyonproject.co.uk
)
Thank you to Nuffield Council on Bioethics and to AHRC for inviting me to speak about on dementia and the Big Society.
The Coalition Government’s Big Society agenda has three themes; social action, community empowerment and reform of public services. My real interest, however, is with dementia friendly – or dementia capable - communities - and
Big Society is the current policy framework to hang that on.
The National Dementia Strategy has been an enormously positive development in public policy and primarily focuses on re-engineering the health and care system so that it works better for people with dementia who need to access general and specialist services. It also touches raising public and professional awareness of dementia and you will be aware of the national awareness campaign in 2010 showing people in earlier phases of dementia telling us ‘I have dementia, I also have a life’. This years awareness campaign being piloting in some regions of the country ‘Dementia; if you’re worried, see your doctor.’
In March 2010 I wrote a discussion paper on dementia friendly communities.
The ideas were well received and so in February this year we held a Think Tank on Dementia and the Big Society at which some of today’s audience was present.
A Think Tank is defined as ‘a person or group of people who are a source of information and who find solutions to a problem’. The problem we addressed was the exclusion of people living with dementia from society; from their communities of interest and geography. We looked at each of those 3 themes in
Big Society through the lens of dementia. I’ll describe some of the challenges and solutions we came up with.
Before we start on the detail perhaps we should remind ourselves what people with dementia have to say about living in their communities and about exclusion.
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The Alzheimer’s Society report My name is not dementia 1 provides some important insights into the experiences of people with dementia. To provide information to the Think Tank I commissioned Innovations in Dementia 2 to ask people with dementia what they want from their community.
Here are some quotes from My name is not dementia;
‘I want to keep my own environment that I am in because I am familiarised with it’
‘It’s not just the environment in the house, it’s when you go out….in the bank, environment in the shops you go into, or the restaurants is another environment you have to overcome’.
‘It would be nice if a lot of people had more understanding and appreciate what you have got….like I was in town the other Saturday and this other lady started laughing at me because I was struggling to talk’.
And here is a quote from the Innovations research;
“Yes - loss of memory, self-esteem and confidence means social networks and friendships are non-existent.’
And a few weeks ago I heard on the radio 2 a woman who had contacted the station to say she was enjoying the company of the radio show whilst sitting in bed with a cup of tea enjoying a quiet moment. She cares for her husband who has dementia and has found that friends and family have disappeared.
Stigma
There is still stigma attached to dementia. Getting dementia is known to present a greater fear than getting cancer. From the research done for the first awareness campaign people who don’t have dementia said they avoid people with dementia because they simply don’t know how to deal with it; people don’t know how to respond to someone who can’t find words, who get disorientated and who talk ‘nonsense’. So fear and stigma result in people with dementia being isolated from their networks and communities.
The Innovations in Dementia work also found that people with dementia stop doing things in the community because they were worried they couldn’t cope because of their dementia and that other people don’t understand or know about dementia. Almost without exception people blamed the dementia rather than shortcomings in the environment or the community. So it seems the social model of disability has yet to significantly impact on our thinking and the lives of people with dementia. That says a lot about my influence; I published a paper in the
Journal of Dementia Care on the social model of dementia in 1996!
1 My name is not dementia, Alzheimer’s Society, April 2010
2 Dementia Capable Communities – the views of people with dementia and their support, February 2010, www.innovationsindementia.org.uk
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I believe we’ve compounded stigma by removing people with dementia from communities and placed them in care homes earlier than we might have done to people with equivalent levels of physical impairment. So, as we’ve become more acquainted to people with other impairments living in our communities people with dementia have been largely absent. Public services simply haven’t been able to come up with the range of solutions and support necessary to enable people to stay at home for longer.
Community development might have helped one of my clients many years ago.
As a social work assistant I worked with a lady who lived in supported housing.
Her bungalow was in a cul-de-sac on the edge of an estate. She had been a lifelong smoker and as her dementia advanced she became a chain smoker because she simply forgot she’d just had a cigarette. She constantly ran out of cigarettes so she would go out onto the street, sometime with a £20 note and ask anyone who passed to nip down to the shop to buy her more cigarettes. Now, she’d also lost the ability to use money and as this was in 1992/3 a £20 note would have bought her many packets of cigarettes – and groceries and helped pay her bills. Many local people were only too happy to oblige in taking her £20 note but sadly not in returning the change or bringing her cigarettes. So my client had mounting debts and was exposing herself as being vulnerable. Had we more resources in our tool bag we might have been able to work with local people to help support our client to live at home, safely, for longer. Instead, we had no other option than to placw her into a care home.
We still hear relatively few voices of people with dementia. The Alzheimer’s
Society does a sterling job in raising awareness and there are groups around the country that are very effective. But I’m comparing the volume of their voices with other groups of people. The Department of Health initiative on user-led organisations did not exclude ULOs for people with dementia but neither did the programme actively include them either. Consequently, people with dementia did not substantially benefit from that programme. I don’t think we can yet say there is a social movement of people with dementia. There are some examples of dementia user-led organisations across the country and case examples in the
Bioethics report. We ran another Think Tank in 2010 on ULOs for people with dementia and I’m pleased to say that Joseph Rowntree Foundation has recently announced it is investing in this theme.
There are examples around the world where local communities are being taught more about dementia so they can engage more meaningfully and look out for their neighbours who are more vulnerable. In Japan the 100 member committee
to create safe and comfortable communities for people with dementia has projects across the country. Their websites says
‘An important concept in caring for people with dementia is that each patient continues living in the manner that suits him or her best and that we continue living alongside dementia. This means an effort not just by individual specialists or individual facilities but by each and every citizen, working together with the health care, welfare, and government sectors, to build communities that will support people with dementia’.
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In Omuta city, if a person with dementia goes missing a network of 70 residents, shops and other volunteers are notified and look out for that person. There is a communication network to report the missing person and to coordinate any sightings. Now the social structures in Japan are very different to ours and so too is their emergency infrastructure so we might not be able to directly transplant their system into our cities but we can work out what systems we can effectively create in our rural, small town, urban and inner city areas.
Bournemouth Community Health Trust has seconded a member of staff from the Alzheimer’s Society to work in the community mental health team providing information to local businesses and tradesman to raise awareness and understanding of dementia in a locality where there is a high number of older people, living alone and having dementia. The Trust leafleted local businesses inviting them to a community meeting. An amazing 50 people turned up to learn more about dementia and how they could help and respond to their customers whom they felt were vulnerable and needed help. I visited a number of those traders and asked them what their motivation to get involved was; one told me they’d simply never been asked to get involved in anything like this before and they were curious; another said she’d worked in a day centre years ago and felt an affinity with older people, another realised a commercial opportunity. A cafe provides a discounted lunch for people with dementia once a month and the
Alzheimer’s Society outreach worker comes along to give people with dementia support and advice and they also seem to have fun. The outcomes of this initiative is that local people have a real café to go to for their Al’s Café, an informed bank teller recognised warning signs and averted a conman taking thousands of pounds from a customer’s account and the dry cleaners now know where to signpost people for help – and they do.
There are other embryonic developments in this area. For example, Skills for
Care’s ‘Only a footstep away?’ 3 report is a prelude to a neighbourhood workforce development strategy. It looks at the evidence on social capital, the importance of reciprocity, of bonding and bridging in communities.
Volunteering
We think of people with dementia as being potential recipients of volunteering but Ruth Bartlett at Bradford Dementia Group has completed ESRC funded research on what motivates people with dementia to volunteer as campaigners to achieve greater awareness of the condition. From the research for our Think
Tank one person was quoted as saying;
‘I spend a lot of my time raising awareness about dementia, giving talks. If you want to find out how to fix your plumbing you call a plumber. If you want to find out how to make your service better for people with dementia, who better to ask than people with dementia?’
3 Only a footstep away?: neighbourhoods, social capital and their place in big society, Skills for Care, June 2010
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Public service reform
The coalition government’s ideas about public services reform are about any willing provider and transparency.
Our think tank elected to focus on the relationship between professionals and services and people living with dementia.
It concluded that the time is right to address the imbalance of power between professionals and people living with dementia which can be achieved through.
 Professionals having more conversations with people with dementia
 Review value base of public sector – enablers who are more skilled in communicating and working with people with dementia
 Focus on assets rather than deficits; Joint Strategic Assets Assessments alongside the Joint Strategic Needs Assessments.
In conclusion I think the 3 themes Big Society has a lot to offer people with dementia and it will be good to see investment in the community.
I wonder if community empowerment = public service reform? Social action +
Thank you very much for listening.
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