Dementia is often thought of as a condition that affects older people. But around 5% to 9% of those diagnosed are under 65. For this younger group, living with dementia can create some specific challenges. We spoke to ADSS Dementia Co-ordinators Su Kibbey and Ruth Hornsby about those challenges – and about the help and support available, including with finances. Find out more about young onset dementia here.
One of the first challenges is obtaining a diagnosis. “With young onset dementia, the average time from spotting the symptoms to getting a diagnosis can often be around four years,” says Su. “That can leave people in limbo, knowing something isn’t quite right but not sure what it is or how to deal with it.”
Part of the problem is that the medical profession is slower to consider the possibility of dementia in this group, looking instead for other explanations that might seem more likely, such as depression. “There’s often further neurological testing too,” says Ruth, “aimed at reaching a definitive diagnosis.”
Of course, anyone with symptoms of dementia wants things to be investigated properly. But time spent waiting for a diagnosis is time spent without vital support and practical help. Su and Ruth’s advice? “Take action as soon as you spot symptoms. And keep chasing and following up. No one wants to hear that they’ve got dementia but it’s true what they say – knowledge really is power.”
Want to know more about why prompt diagnosis is so important? Click here to read more.
Finances can also be a particular challenge for people with young onset dementia, who may still be working and have dependents. It’s important to be aware of the help that’s available, and to seek expert advice. “Citizen’s Advice is an excellent source of information,” says Su. Find your nearest branch of Citizen’s Advice here. The Young Dementia Network can also provide advice on all aspects of living with the condition, including finances.
The two main benefits available for people with young onset dementia are:
Employment and Support Allowance (ESA): This is available for people with a disability or health condition that affects how much they can work. You can claim ESA whether you are employed, self-employed or unemployed. Find out more about ESA here.
Personal Independence Payment (PIP): PIP provides extra help with living costs for people with a long-term physical or mental health condition or disability that causes difficulty doing some everyday tasks or getting around. You can get PIP even if you’re working, have savings or are getting most other benefits. Find out more about PIP here.
There are other ways of accessing help and support, too. “Social services can provide help with making adaptations to your home,” says Ruth. “They’ll come out and make an assessment and tell you what support they can provide.” If you have a private pension, contact your provider.
“I worked with one gentleman who was diagnosed with a rare form of dementia and he was able to access his pension early,” says Su. “Living with dementia can be tough emotionally – so if it can be a little easier financially, that has to be a good thing.”
Another thing that can make a difference to quality of life is tapping into carers’ or companion card schemes. Organisations like the National Trust offer free tickets for carers and so do many cinemas. Find out more about CEA cards here. “It might sound like a small thing,” says Su, “but it’s so important that people keep living their lives, getting out and about and enjoying the things they’re interested in.”
Both Su and Ruth report that there can be a reluctance to ask for help, especially among this young group of people with dementia. “There is a stigma around it and there shouldn’t be,” says Ruth. “People will say things like, ‘I’ve worked all my life and never taken anything from the state.’ Well, now’s the time to claim what you’re entitled to and get the support you need to live well.”
The Young Dementia Network is an online community offering a range of resources for everyone living with or affected by young onset dementia, including a webinar on finances on 19 November.
Imago provides a wide of support with health and wellbeing, with a particular focus on the Kent and Medway region.
gov.uk provides information on benefits for people living with health conditions, including on eligibility and working out what you could be entitled to.
Green Doctors is a Kent-based initiative providing free, personalised advice on how to stay warm in your home and save money by cutting your energy bills.
Income Max offers free, confidential money advice, aimed at ensuring you’re getting all the grants, benefits and financial support you’re entitled to.
ADSS provides practical and emotional support with all aspects of living with dementia. Contact us here.