For those of us who were drawn to improve services for older people with mental disorders, including dementia, during the 1970s, we were uplifted by the establishment of the Alzheimer’s Disease Society 1979/1980: Alzheimer's Society - Wikipedia
The model was of a grass roots organisation with local groups, meeting and supporting each other and interacting with Social Services, NHS and other charitable organisations. Larger groups became ‘Branches’ and we all related to a national office, which was supportive and developed ways of sharing information and educational materials, and lobbying Parliament and elsewhere for the benefit of people with dementia, and especially their family carers. There was great commitment and trust. Funds were raised and used locally – initiatives being designed and ‘owned’ locally, with a proportion of funds passed to central office. As with the Hospice movement even now in the UK, the pattern of provision and activity by the ADS was varied – some areas had nothing, others had a lot going on.
There was pride in local achievements – and trust between the ADS and ordinary people with dementia and their families – and with service providers. A small proportion of funds might be used for research, but that was largely seen as the responsibility of government and other agencies – certainly underfunded, but the ADS was to raise the profile of need, not to provide it – This was the approach in most areas, to services and as well as research.
My greatest involvement with the ADS was in Wolverhampton and the Branch there, founded by the marvellous Moira Low with encouragement and guidance from the Dudley Branch. They invented the idea of a little golden elephant lapel badge – Elephants never forget – and we did not forget Dudley Zoo. Moira and the Branch had the trust and admiration of Social Services – led by Martin Shreeve.
The centrally driven change at the end of the 1990s, which disenfranchised local people, was met with dismay, as was the change of name. It has seemed that the Society no longer reflects the needs and wishes of people living with dementia, but has other aspirations.
As much is confirmed by the recent announcement of Alzheimer’s Society research programmes: 2024: An exciting year for research at Alzheimer’s Society | Alzheimer's Society (alzheimers.org.uk)
Excited anticipation of news about lecanemab and donanemab: toxic, expensive, of doubtful efficacy –and recently aborted by the company making them
Diagnosis by biomarker – we are people – more than the sum of our chemistry
Research nurses for clinical trials – fuelling the relationship with the pharma
Longitude prize – encouraging personalised technology-based tools – another approach likely to be linked to manufacture for profit
Accelerator Programme – investment to bring more products to the market
Only the support of additional research on inequalities in healthcare and dementia fits at all well with the sort of things which our Dementia Conversations people rate as important to them – and me.
Flirtation with government and academia and industry may bring in finance and kudos for some – but it is at a tangent to the needs of people on the ground – living with dementia. Our resources would be better focused and administered as they were in the 1980s.
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