Alzheimer's Society

Last updated

Alzheimer's Society
Formation1979
Location
  • 43-44 Crutched Friars, London, EC3N 2AE [1]
Members
25,000
Chief executive
Kate Lee
Website www.alzheimers.org.uk
Formerly called
Alzheimer's Disease Society

Alzheimer's Society is a United Kingdom care and research charity for people with dementia and their carers. It operates in England, Wales and Northern Ireland, [2] [3] while its sister charities Alzheimer Scotland [4] and Alzheimer Society of Ireland cover Scotland and the Republic of Ireland respectively. [5] [6]

Contents

Despite its name, the charity does not exclusively help people with Alzheimer's disease. There are many types of dementia, which is an umbrella term. Dementia types include vascular dementia, dementia with Lewy bodies, frontotemporal dementia, Korsakoff's syndrome, Creutzfeldt–Jakob disease, HIV-related cognitive impairment, mild cognitive impairment, and other rarer causes of dementia. [7]

It is an organisation that provides support for people affected by dementia via a telephone support line, as well as through dementia support workers, printed information and an online community called Talking Point. [8] [3] [9]

Alzheimer's Society funds dementia research. [10] [11] In 2021/2022, £7m was given in 27 awards for new research, and 311 new publications came from their funding. [12]

The society relies on voluntary donations from the public through fundraising and other activities. It is a registered Charity No. 296645, registered as a company limited by guarantee and registered in England No. 2115499. Its registered office is at 43-44 Crutched Friars, London, EC3N 2AE. [13] [14]

As of 2023 the Chief Executive of the Alzheimer's Society is Kate Lee, who replaced Jeremy Hughes on 2 March 2020. [15] [16]

History

The organisation was formed in 1979, [17] [18] following a radio broadcast on the subject of Alzheimer's disease which brought together gerontology researcher Professor Gordon Wilcock with former carer Cora Phillips. [19] In December of that year, Morella Fisher wrote to every British national newspaper about her experiences caring for her husband, who had early-onset dementia, with the story being covered by The Observer , prompting Phillips to get in contact. Within a few weeks, the trio had established the Alzheimer's Disease Society, with an aim to raise awareness, provide information for families and generate funds for research. [20]

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. [21] [ better source needed ]

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 (2012) has a network of over 2000 services. [22] [23] [ better source needed ]

By of 2019, the Society had an income of £107 million, £80 million of which was from public donations. [24]

As of financial year ending 31 March 2022, the Society had a total income of over £116 million, with nearing £89 million from donations and legacies. [25] [26]

Kate Lee's appointment in 2020 was brought forward by six weeks following allegations in The Guardian that the outgoing chief executive Jeremy Hughes 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", as allegations of £750,000 NDA payments were not substantiated and staff could report inappropriate behaviour. [27] Commenting on the result, The Guardian stated that the commission had admitted failing to investigate the original complaint properly in 2018 or interview complainants [28] whilst the chair of the Alzheimer's trustees, Stephen Hill, said the society wanted to ensure best practice and had reviewed its procedures. [29]

Activities

The society's activities primarily focus on improving care and the lives of people living with dementia, unlike other charities such as Alzheimer's Research UK, that predominately exist to fund research projects aimed at finding cures or treatments. [30]

Local activities

Alzheimer's Society organises and provides local activity groups and support programmes. These include activities such as Singing for the Brain, designed to promote communication and stimulation through singing, and Dementia Cafes, which offer a relaxed environment to talk about the challenges of living with dementia. [31]

Information

The society provides information and support for people with dementia and their carers by telephone [32] and online, [33] including factsheets [34] [ better source needed ] which can be downloaded.

They also provide information for health and care professionals to help them to care for people with dementia. [35]

Campaigning

The society campaigns [36] [ better source needed ] for the rights of people with dementia and their carers, including by lobbying for governmental policy changes. [37]

It also runs public-facing campaigns to generate awareness of dementia and the challenges of dementia care, including the recent award-winning It's Not Called Getting Old, It's Called Getting Ill video, aimed at reframing public attitudes to receiving diagnoses [38] and the Forgotten Third campaign in association with the England women's football team, highlighting the likelihood of developing dementia. [39]

Research and technology

The society develops technology to support awareness and improve care, such as the 2011 Brain Map iPhone app to spread awareness of dementia. [40]

It runs an accelerator programme, providing grants and support to people developing products and services to support those living with dementia, [41] including launches of products such as Sibstar, a specially designed debit card, [42] SmartSocks, intended to track agitation and alert carers of distress, [43] and Jelly Drops, sweets that provide easy hydration. [44]

It also is one of three founding funders of the UK Dementia Research Institute, a joint £290 million investment with the Medical Research Council and Alzheimer's Research UK. [45]

Alzheimer's Society has been a funder of dementia research for over 30 years and provides financial backing for research that focuses on developing the care and support available for those living with dementia, improving diagnoses and discovering treatments. [46]

They also support researchers with the Dementia Knowledge Centre, an online catalogue comprising 13,000 dementia-specific items. [47]

Criticisms

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. [48] [49] In 2020 PETA referred to Alzheimer's Society's funding of research using animal testing as gaining irrelevance for a human brain disease, commending the Society's establishment of the "Brains for Dementia Research" initiative where people can pledge to donate their brains after they die. [50] [51]

Alzheimer's Society has previously 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 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. [52]

Local branch closures

The society drew criticisms of becoming too centralised and was subject to protests from members following its announcement to close all of its 240 local branches in 2010, restructuring them into 49 regional centres. [53] An investigation led by Alan Fowler, former chair of the society's Winchester branch, claimed the society misled branch committees during the process and failed to meaningfully consult them. [54]

See also

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References

  1. ↑ "ALZHEIMER'S SOCIETY overview - Find and update company information - GOV.UK". find-and-update.company-information.service.gov.uk. Retrieved 24 July 2023.
  2. ↑ "Alzheimer's Society". www.alzheimers.org.uk. Archived from the original on 1 January 2013.
  3. 1 2 "Alzheimers Society: What, who, how, where". register-of-charities.charitycommission.gov.uk. Charity Commission for England and Wales. Retrieved 31 July 2023.
  4. ↑ "We are Scotland's dementia charity". Alzheimer Scotland. 2 October 2023. Retrieved 2 October 2023.
  5. ↑ "We are Scotland's dementia charity". Alzheimer Scotland. 21 July 2023. Retrieved 31 July 2023.
  6. ↑ "How can we help you today?". Alzheimer Society of Ireland. Retrieved 31 July 2023.
  7. ↑ "Rarer types of dementia". www.alzheimers.org.uk. Alzheimer's Society. Retrieved 31 July 2023.
  8. ↑ "Our support services". Alzheimer's Society. Retrieved 31 July 2023.
  9. ↑ "Caring for someone with dementia at home". Age UK. Retrieved 31 July 2023.
  10. ↑ "Funders and donors". UK DRI: UK Dementia Research Institute. 31 July 2023. Retrieved 31 July 2023.
  11. ↑ "Research and project grants". www.ukri.org. UK Research and Innovation. Retrieved 31 July 2023.
  12. ↑ "Annual Accountability and Impact Report 2021/22" (PDF). Alzheimer's Society. p. 14. Retrieved 31 July 2023.
  13. ↑ "Alzheimer's Society: Contact information". register-of-charities.charitycommission.gov.uk. Charity Commission for England and Wales. Retrieved 31 July 2023.
  14. ↑ "Alzheimer's Society overview". find-and-update.company-information.service.gov.uk. Companies House. Retrieved 31 July 2023.
  15. ↑ "Kate Lee joins Alzheimer's Society a month early". Civil Society news. 2 March 2020. Retrieved 4 March 2020.
  16. ↑ "Our leadership team". www.alzheimers.org.uk. Alzheimer's Society. 16 June 2022. Retrieved 31 July 2023.
  17. ↑ "Why we are still campaigning to make sure people with dementia have the rights they deserve". Harrow Times. 17 January 2019. Retrieved 1 August 2023.
  18. ↑ "ADI - Alzheimer's Society" . Retrieved 1 August 2023.
  19. ↑ "A Watching Brief - St Augustines' Priory". 8 November 2019. Retrieved 2 August 2023.
  20. ↑ McKie, Robin (3 November 2019). "Dear editor … how a letter about one family's dementia plight helped millions". The Observer. ISSN   0029-7712 . Retrieved 2 August 2023.
  21. ↑ "Alzheimer's Society". www.alzheimers.org.uk.
  22. ↑ "End of life care for a person with dementia | Alzheimer's Society". www.alzheimers.org.uk. 3 September 2021.
  23. ↑ "Find support near you | Alzheimer's Society". www.alzheimers.org.uk. Archived from the original on 13 June 2012.
  24. ↑ Murphy, Simon (21 February 2020). "Alzheimer's Society 'paid out £750,000' to staff amid bullying claims". The Guardian. Retrieved 21 February 2020.
  25. ↑ "ALZHEIMER'S SOCIETY - Charity 296645". register-of-charities.charitycommission.gov.uk. Retrieved 6 May 2023.
  26. ↑ "Charity overview, ALZHEIMER'S SOCIETY - 296645, Register of Charities - The Charity Commission". 6 May 2023. Archived from the original on 6 May 2023. Retrieved 6 May 2023.
  27. ↑ Andy Ricketts (4 May 2020). "Regulator finds 'no evidence of wrongdoing' at Alzheimer's Society". thirdsector.co.uk. Retrieved 9 May 2020.
  28. ↑ Simon Murphy and Benn Quinn (4 May 2020). "Anger as watchdog clears Alzheimer's Society of wrongdoing" . Retrieved 9 May 2020.
  29. ↑ "Our comment on the conclusion of the Charity Commission's regulatory case". alzheimers.org.uk/. 4 May 2020. Retrieved 9 May 2020.
  30. ↑ "Alzheimer's Research UK or Alzheimer's Society". Alzheimer's Research UK. Retrieved 3 August 2023.
  31. ↑ "Singing to help in Alzheimers battle". Echo. 3 October 2013. Retrieved 4 August 2023.
  32. ↑ "Dementia support line | Alzheimer's Society". www.alzheimers.org.uk. Archived from the original on 7 July 2012.
  33. ↑ "About dementia | Alzheimer's Society". www.alzheimers.org.uk. Archived from the original on 28 January 2010.
  34. ↑ [ better source needed ] Helpline | Alzheimers.org.uk Archived 3 May 2012 at the Wayback Machine
  35. ↑ "For dementia professionals | Alzheimer's Society". www.alzheimers.org.uk. Archived from the original on 15 May 2012.
  36. ↑ "Campaign with us | Alzheimer's Society". www.alzheimers.org.uk. Archived from the original on 1 July 2012.
  37. ↑ "Policy and influencing". www.alzheimers.org.uk. Alzheimer's Society. Retrieved 31 July 2023.
  38. ↑ "How the Alzheimer's Society helped to reframe diagnosis to shift public attitudes". The Drum. Retrieved 3 August 2023.
  39. ↑ Johnson, Mark (13 April 2023). "Alzheimer's Society launches campaign at England game -". mediashotz.co.uk. Retrieved 3 August 2023.
  40. ↑ Lake, Howard (31 January 2011). "Alzheimer's brain iPhone app includes text-to-donate function". UK Fundraising. Retrieved 31 July 2023.
  41. ↑ "Alzheimer's Society accelerator programme proving 'invaluable' despite some risks". www.civilsociety.co.uk. Retrieved 1 August 2023.
  42. ↑ Prevett, Hannah (1 August 2023). "App that offers financial freedom for people with dementia". ISSN   0140-0460 . Retrieved 2 August 2023.
  43. ↑ Knapton, Sarah (9 May 2022). "'Smart socks' to keep dementia carers on their toes by tracking patients' stress levels". The Telegraph. ISSN   0307-1235 . Retrieved 2 August 2023.
  44. ↑ Cookson, Clive (25 June 2019). "How smart tech is helping people with dementia". Financial Times. Retrieved 2 August 2023.
  45. ↑ "UK DRI: UK Dementia Research". UK DRI: UK Dementia Research Institute. 6 December 2018. Retrieved 6 December 2018.
  46. ↑ Institute, UK DRI: UK Dementia Research (4 August 2023). "Funders and donors". UK DRI: UK Dementia Research Institute. Retrieved 4 August 2023.
  47. ↑ "HLISD: Health Libraries and Information Services Directory". www.hlisd.org. Retrieved 4 August 2023.
  48. ↑ "Animal rights group declares war on leading health charities". The Independent. 20 June 2011.
  49. ↑ "Charities are attacked over experiments experiments [sic]". The Scotsman. 20 June 2011. Retrieved 24 July 2023.
  50. ↑ "Health Charities are they spending your money on animal testing?". Archived from the original on 25 May 2017. Retrieved 24 July 2023.
  51. ↑ Fluckiger, Saskia (20 September 2020). "Does Killing Countless Animals Actually Help Treat Alzheimer's? PETA Provides a Better Way". PETA UK. Retrieved 11 October 2023.
  52. ↑ Alzheimer's Society's view on the use of animals in research at the Wayback Machine (archived 24 July 2023)
  53. ↑ Plummer, John (2 February 2010). "Alzheimer's Society defies protest over branch closure". Third Sector . Retrieved 4 August 2023.
  54. ↑ Plummer, John (23 March 2010). "The Alzheimer's Society: a rebellion at the grass roots". Third Sector . Retrieved 4 August 2023.
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