Last Updated: October 3, 2024
Beth Britton explores dementia in people under 65 and speaks to Dementia UK Admiral Nurse Jules Knight to understand the post-diagnostic challenges that younger people with dementia experience and what to do after a diagnosis
In Part One of my interview with Jules Knight, Consultant Admiral Nurse for Young Onset Dementia at Dementia UK, we looked at the challenges around diagnosis and post-diagnostic support when you’re under 65 and experiencing dementia symptoms.
Jules said: “We know that it takes much longer for someone under 65 to be diagnosed with dementia, on average twice as long compared to a person over the age of 65. There are many challenges people with young onset dementia face when seeking a diagnosis and this is largely due to the lack of awareness around the condition.”
In Part Two we explore the day-to-day and lifestyle factors that make developing dementia as a younger person uniquely difficult, and Jules gives her top tips for what to do after a diagnosis.
Interview with Jules Knight – Part Two
What are some of the key day-to-day and lifestyle challenges younger people experience in comparison to older people who are living with dementia?
Jules: “Younger people and their families who are living with dementia are experiencing the condition at an unexpected time in their lives and face some unique challenges that rarely affect older people living with dementia. Family life can look quite different for a younger person with dementia; there may be children living at home and they may have a caring role for their own parents. Families affected by young onset dementia experience significant relationship changes across the generations.
The younger person living with dementia may still be part of the workforce and contributing financially to the household. They may have a mortgage, car loan or they could potentially be in a position where they have lost their job due to their symptoms, all of which means they could be struggling financially due to their change in circumstances.
Given these challenges, people and families living with young onset dementia often need significantly more support than their older counterparts, but often find that there is very little or no support.”
What would be your top tips for life after a diagnosis of young onset dementia?
Jules: “It can feel like a very challenging time when a person receives a diagnosis of dementia, so it’s important to get support. Sharing the diagnosis with family and friends can help others around the person understand what is happening and be supportive. It’s very important to stay in contact so that you do not feel isolated and alone.
The person may be able to access a local young onset peer support group for themselves and/or their family carer. The family may also want to speak to an Admiral Nurse. Dementia UK’s Admiral Nurse Dementia Helpline is contactable on 0800 888 6678 or by email helpline@dementiauk.org and is staffed by experienced Admiral Nurses. You can also book a free video or phone appointment to get expert dementia support from an Admiral Nurse. Find out more on the Dementia UK website
There are also some practical and important things that need attention. It is advisable to consider these quite early on, even before the diagnosis is shared in some cases.
Lasting power of attorney (LPA) is a legal process where a person can appoint an attorney/s to act on their behalf if they reach the point where they are no longer able to make a decision themselves. Usually the attorney would be a close family member or friend who is trusted to represent the person’s wishes. There are two types of LPA, one for property and finance and one for health and welfare. An LPA can be set up online or with a solicitor.
Making a will, or reviewing an existing will, is important so that the person with dementia can ensure that their money and possessions will go to the people and causes of their choosing. It is important to do this whilst the person with dementia has the capacity to make decisions about what can be complex financial situations.
Reviewing finances, including letting the person’s bank know about their diagnosis, can be helpful as you can discuss ways that they can support the person going forward. It might be helpful to share the LPA early on and consider options like setting withdrawal limits on accounts.
Seeking the support of a qualified financial adviser is helpful if the person has complex financial affairs as they can advise on future financial planning such as pension management, mortgages and savings. The person with dementia may also be entitled to benefits such as the Personal Independence Payment (PIP) and the main carer may be entitled to Carers Allowance. Benefit entitlement can be checked online and it’s helpful to access the support of a local benefits advisor via the Citizens Advice Bureau too.
If the person who has been diagnosed is employed, it is advisable for them to share their diagnosis with their manager or Occupational Health team, bearing in mind that people living with dementia are legally protected from discrimination at work. It’s worth being aware that for some roles the person may be contractually required to do this.”
Many thanks to Jules Knight for sharing her expertise and insights into young onset dementia.
Further resources
- Dementia UK – Young Onset Dementia
- Young Dementia Network
- Rare Dementia Support
- Alzheimer’s Society – Young Onset Dementia
- Alzheimer’s Research – Young Onset Dementia
- Younger People with Dementia (YPWD)
- TIDE (Together in Dementia Everyday) – Young Onset Carers Group
- Dementia Community – ‘I want to live as normal as possible’ webinar on young onset dementia
- DEEP (Dementia Engagement and Empowerment Project)
- Dementia Diaries – Young Onset Dementia
- Dementia Carers Count
