Dementia Matters

Over the last 15 years there has been enormous progress in how the health and care system responds to the challenge of supporting people living with dementia. We have moved from a situation where the word dementia was a taboo, to one where there is increasing acknowledgement that people living with dementia can have a good life, if they are properly supported both by health and social care and also by the wider society.

One of the great success stories has been the development of the Dementia Friends programme, which has seen well over a million people trained as dementia friends and this has translated into more understanding and better services within local communities. People living with dementia have the same rights, aspirations and desires as the rest of us, and what we need to do is to deliver a society within which people who are living with dementia and their families can live well.

One of the most powerful things about Dementia Friends, has been the way in which it has addressed how to support people living with dementia, not only in health and social care, but more importantly in the places where they will spend much more of their lives. It is great to see supermarkets, banks, leisure clubs, transport providers and libraries leading the way in developing better understanding of how to support people living with dementia and ensuring their services are as dementia friendly as possible.

I was recently talking to a person who had early onset dementia and I asked her, what in her view, was the biggest challenge to Living Well? Without hesitation she said “the attitudes and ignorance of other people who do not understand dementia and how it affects me”. This interaction proved to me that we have come a long way in improving attitudes, but there is still a long way to go.

Underpinning much of the stigma and negativity attached to dementia is the fact that it is a condition that primarily affects older people. There is a stark reality that our society is institutionally ageist and many institutions of Government and state, find it difficult to deal with older people and still more so, people living with dementia. If we are going to improve things across society, we have not only got to ensure that our communities and our services are dementia friendly, but we have also got to ensure that our society stops being ageist.

Care England recently brought together a group of leading thinkers in the field of ageing and we concluded that many of the rights and entitlements that were available to older people were not being delivered because of ageism in the system. We have concluded that we need to have a structural way of challenging this. In Wales, they have a Commissioner for Older People, who has structural power to ensure that both the system and the Government deliver support to older people on an equal basis with other groups. We have had for many years, the Equality and Human Rights Act, but this seems to have had little impact on ageism.

I believe we need a Commissioner with statutory powers, who can call Government and service providers to account when they see ageism. This is a role that should be fulfilled by the Equality and Human Rights Commission, but they have singularly failed to deliver equality of access to services in health and social care.

It is my view, that we should top slice their budget and create a Commissioner with the power and the desire to eradicate ageism in all bits of society. If we do this and we get a good outcome that will help everybody and it will particularly help people living with dementia and other long-term conditions.



Edel Harris





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