The organisation was formed in 1979, when two people with extensive experience of caring for relatives with dementia discussed the pressing need to raise awareness of dementia and to improve the quality of care, support and information for people with dementia and their carers. This led to the creation of the Alzheimer's Disease Society. A steering committee was formed, consisting of carers and medical professionals, and the first annual general meeting was held on 13 September 1980. This first AGM was attended by 98 members and supporters. The first Newsletter was published in January 1981. A development officer was employed at around this time, and the first branches were established in Oxford and Bromley in 1980 and 1981 respectively. One of the Society's earliest contributions to research, as described in the Newsletter of January 1981, was a request for brain tissue donations to help support research studies. Through the 1980s and 1990s the society continued to grow, with volunteer committees establishing branches across England, Wales and Northern Ireland. At the AGM in 1999 members of the society agreed the change of name to Alzheimer's Society. By 2003 the Society had a turnover of £30 million, with over 230 branches across England, Wales and Northern Ireland. In 2009/10 the Society's income had grown to £58.7 million and it currently has a network of over 2000 services. As of 2019 the Society had an income of £107 million, £80 million of which was from public donations.
Activities
The society:
has 230 local branches provide support and information for people with dementia and their carers
provides information and support for people with dementia and their carers by telephone and online, including factsheets which can be downloaded
supports research along the themes of "cause, cure, care", by making research grants and providing the "Dementia Knowledge Centre", whose catalogue is available online
provides information for health and care professionals to help them to care for people with dementia
campaigns for the rights of people with dementia and their carers, including awareness-raising and lobbying.
demonstrate best practice in dementia care and support
provide the best advice and support to anyone dealing with dementia
influence the state and society to enable those affected by dementia to live as they wish to live.
By pursuing these four goals together they hope to mobilise thousands of people. With them they hope to "reduce the impact of dementia on lives today and create a world without dementia tomorrow".
Criticism of animal research
In 2011, Animal Aid challenged four charities that are the focus of their "Victims of Charity" campaign – Cancer Research UK, the British Heart Foundation, Parkinson's UK and Alzheimer's Society – to a public debate on the scientific and moral issues relating to their funding of animal experiments. PETA also includes Alzheimer's Society on its list of charities who test on animals. Alzheimer's Society has stated that it supports involving animals in medical research, and that it considers animal research has contributed to advances in vaccination, drugs, surgical techniques and better understanding of the biology of diseases and medical conditions including Alzheimer's disease and dementia. However, it has also noted the ethical concerns involved, and stated that animals should be used in restricted circumstances, that any animals used for research should be treated humanely, and that alternative techniques should be employed where possible.
Cleared after newspaper allegations of staff bullying
Kate Lee's appointment in 2020 was brought forward by six weeks following allegations in The Guardian that the outgoing CEO had bullied staff. In May 2020, ThirdSector magazine reported that the regulator, the Charity commission found the society had "acted in line with their legal duties", inasmuch as allegations of £750k NDA payments were not substantiated and staff could report inappropriate behaviour. Commenting on the result, the Guardian pointed out that the commission had admitted failing to investigate the original complaint properly in 2018 or interview complainants whilst the chair of the Alzheimer's trustees, Stephen Hill, said the society wanted to ensure best practice and had reviewed its procedures