My speech to the UK Dementia Congress 2015
Ten years ago most people with dementia were undiagnosed. Family members cared for them, or they were placed in care homes. Dementia was little talked about. It frightened people. GPs didn’t have any treatment or cures so they preferred not to refer for diagnosis.
There were memory services and outreach nurses, as there are now, and probably with about the same capacity as now. These services provided diagnostic tests and diagnosis and information afterwards. Aricept was prescribed but limited, not least because of low diagnosis rates and Nice guidance.
I don’t think there was much else to support people living with dementia then.
So, what have we got now?
We’ve had five years of Dementia Friends and much increased research about the disease and about its social effects. Loneliness, isolation, depression…
We have a lot more people living with dementia, with and without diagnosis. With the diagnosis rate now at 66%, about 122,000 more people have been diagnosed in the last eighteen months. The total estimated number of people living with dementia in the UK is 850,000, of whom 562,000 have a diagnosis.
There are outstanding models of great dementia services and support around the country.
Dementia Advisers or Navigators are spreading slowly. These well informed and trained people provide a single point of access and advice for people with dementia and their carers. They help people to live well and to lead fulfilling lives.
There are Admiral Nurse services across the country, but these are geographically sporadic, operating in about 60 locations in England. They provide hugely respected professional advice and support mainly for carers of people with dementia.
There are Dementia Roadmaps, fourteen in England at the last count. These bring together information in one place for primary care staff, for people with dementia and for carers. They include details of local activities, groups, support, sources of information, charities and public sector providers. Fantastic resource but sporadic. We’re developing one in Shropshire right now.
There are dementia cafes, diamond drop in centres, singing for the brain, walking football, men’s sheds, peer support groups for carers and for people with dementia. These are mostly provided by the third sector with very limited funding from commissioners.
Local examples of dementia services include the Stoke dementia primary care liaison team. Herefordshire community dementia service. BUDS…better understanding of dementia for Sandwell. Great services. Useful, relevant. But they can only signpost people to the handful of support groups that exist.
There is a growing network of Dementia Action Alliances across the country, volunteers and local businesses and organisations working to make their communities more dementia friendly.
Hospitals are beginning to create dementia friendly environments, and this is now included in the annual PLACE audits. Hospital staff are provided with dementia training on induction, and many are doing more in depth courses to become dementia champions on wards.
A new Dementia Friendly Hospitals charter is available for Trusts to work towards, and some are doing so.
How many people actually attend the support groups? 10 or 15 per session? Often the diagnosed and the carer. And they go back several times, perhaps for years. So twelve meetings of a peer support group might support 15-20 people in total each year.
In Shropshire we have 5,000 people living with dementia. 3,000 diagnosed. 2,000 living in the community. Plus their carers. That’s around 2,000 diagnosed, plus 2,000 carers, plus 2,000 undiagnosed, and their carers. 8,000 people needing support at times. Only about 300 of them access groups, support or training each year.
That, my friends, is a disgrace. And it’s happening all over the country.
It is quite literally a post code lottery as to whether the services exist near you.
Let’s not pretend that a handful of wonderful support groups and dementia advisers and carer support courses means we’re doing well. It is a drop in this ocean of 850,000 people living with dementia.
I estimate that between 5 and 10% of people with dementia and their carers ever attend support groups or training courses. Or have a dementia adviser.
A recent survey in the West Midlands showed that 10 out of 14 local authority areas claim to provide dementia advisers to all those diagnosed. But only 20% of individual respondents had ever heard of them. And only 12% of carers said they had accessed respite support.
So well over one million people affected by dementia in the UK get little or no support.
And that is a disgrace.
Has any more spending gone into supporting the extra 122,000 people with diagnosis in the last 18 months? I can’t see it.
That is a disgrace.
Carers who can’t cope ask for respite. Councils say no. Put up barriers. Hand out application forms. The carer gets sick. The person with dementia is admitted to hospital or care. What does this cost? Fifty times the cost of two hours respite through a funded charity.
This is a crisis. We must fund carers to stay healthy, have a rest, take a holiday, and we must keep people with dementia in their communities, at home.
Cancer diagnosis, treatment and support has rightly been hugely funded and resourced. Someone told me the other day that when her mother had cancer they had so much support it became tiring and confusing. When her father developed dementia there was nothing.
That really is a disgrace.