September is World Alzheimer’s Month and this year’s focus is on the stories of those who have experienced dementia first-hand.
The Advocacy Project has a long history of supporting people with dementia, of which Alzheimer’s disease is just one type. You can learn about some of our some of our more recent work here. During 2024, we worked with over 130 service users who had been diagnosed with dementia, supporting them to have a voice in their future health care.
Dementia is a progressive illness where problems with memory or other types of thinking make it hard for a person to do everyday activities by themselves. The loss of autonomy or independence can be a shock to those who have lived very independent lives.
Our advocates offer support to anyone deemed to lack capacity after a capacity assessment, and this can include those with a diagnosis of dementia. Through advocacy, we’re able to offer reassurance and support to enable individuals to live according to their needs and wishes, whilst keeping their safety as a priority.
One of our Independent Mental Capacity Advocates (IMCA), Lisa*, supported 80-year-old Jack* after he was diagnosed with dementia. Jack had been referred to a care home following a fall, which had ultimately led to hospital admission. Around this time, Jack’s neighbour had also begun to worry that Jack hadn’t been feeding himself adequately, and so there were concerns about him continuing to live on his own.
When Lisa met with Jack, he told her he was angry he’d been placed in a care home. He considered himself very independent and was distressed he couldn’t return home to live on his own. Lisa could see that the dementia was impacting how Jack was able to communicate, and she was concerned about his capacity to weigh up information and make decisions about his ongoing care. However, it was a priority to support him to have a say in his care plan and to feel more in control of decisions made about his future.
Jack agreed he wanted Lisa to be present at his care review, so that she could help clarify anything he found difficult to understand. Although Jack was initially frustrated by the two options offered by his social worker – to remain at the care home or to move back to the flat with a care package in place – with Lisa’s support, patience and rephrasing of options, Jack was able to weigh up the two alternatives and express his wish for the least restrictive option, one that Lisa and other professionals knew wouldn’t compromise his safety.
Jack was able to return home with a trial care package in place and with the understanding that his situation could be reassessed or reduced if he was coping well. The process helped Jack to arrive at his own decision and maintain his sense of autonomy, despite the challenges that having dementia can bring. A best-interest decision was made with Jack’s concerns and desires in mind, an outcome that likely wouldn’t have been available to him without the support of an IMCA.
One of our service users has shared a first-hand account of living alongside dementia, and how it had a huge impact on their day-to-day life. We’re very grateful to the author of this blog piece for writing so openly about their experience. Dementia is the UK’s biggest killer and the largest health and social care issue of our time, so we know that what they describe will resonate with many of us.