Urgent need for people with dementia to receive better financial and legal advice

Young woman helps older lady with paperwork

Researchers at the University of Liverpool dedicated to improving care for dementia are calling out for better legal and financial advice to be given at the point of diagnosis.

In a recently published paper, academics provide clear evidence that more needs to be done to educate people with dementia and their friends and family – their unpaid carers – on how best to manage finances and legal affairs.

The first of its kind, the paper illustrates how people living with dementia and their unpaid carers are facing financial and legal issues surrounding the dementia diagnosis, and how these impact on their ability to plan for future care costs. It has also identified a need to explore how those from lower socio-economic backgrounds are being disadvantaged further by a lack of knowledge in this area.

More than 900,000 people are living with dementia in the UK, with numbers expected to reach 1 million by 2024. Dementia is a global public health concern, which not only affects the person living with the condition, but also their family members and friends.

The research conducted by University of Liverpool’s Department of Primary Care and Mental Health, and the National Institute for Health Research’s Applied Research Collaboration (North West Coast), invited the personal experiences of those with dementia and their family/friends. Here, they shared instances of strained relationships, challenges when implementing legal arrangements, anxiety caused by financial worries and feelings of distress and frustration.

Study Lead Dr Clarissa Giebel at the University of Liverpool’s Institute of Population Health said: “Managing finances in dementia and on someone else’s behalf can be difficult, especially with navigating the legalities surrounding this activity. Our research highlights that there is little to no guidance on how finances should be handled, or care paid for, causing difficulties in the implementation even when legal agreements were in place.

“At the University of Liverpool, one of our key research aims is dedicated to ensuring people live well, and in this case advocating for appropriate advice at the right time. Receiving guidance from the NHS at the point of diagnosis means that those learning to live with and care for someone with dementia don’t have the added pressure of financial and legal difficulties.”

Kath Halpin, an unpaid carer who shared her experiences as part of the study, said: “My mum had always managed the family finances and one of the first noticeable signs that something was wrong was when mum started to become fixated about money and was having problems handling money. Thankfully, my parents planned ahead and put processes in place to help me manage their affairs. But I did delay registering the power of attorney and looking back this was probably because I was in denial about mum’s dementia. I’d urge anyone who is diagnosed with dementia to organise your legal and financial affairs while you can still make decisions for yourself and I’m thankful this study shines a spotlight on the type of practical support tens of thousands of families need to navigate their way through a really challenging time.”

The publication of this paper coincides with Dementia Action Week, Alzheimer’s Society’s biggest and longest running awareness campaign. The charity is encouraging people who are concerned that they or someone they know may be experiencing dementia symptoms to seek further help.

The paper, ‘The legalities of managing finances and paying for future care in dementia: A UK-based qualitative study’, was published in Aging & Mental Health (DOI: 10.1080/13607863.2023.2209035).