When you hear the word dementia, what comes to mind? An elderly person? Alzheimer’s? Memory loss? Do you feel uncomfortable thinking about it? It is a word with so many stigmas attached and is surrounded by many misconceptions. In honour of World Alzheimer’s Day (21 September), I thought that I would raise awareness of the condition and address one of the main misconceptions – that it is a natural part of ageing.
What is dementia?
The word actually describes a set of symptoms that may include memory loss, difficulties with planning, problem-solving or language, and sometimes in mood and behaviour and it is not a natural part of ageing. There are many types with the most common types being Alzheimer’s disease and vascular dementia.
It is not just an elderly person’s disease
While the chance of developing dementia increases with age, younger people can also develop the disease. It is estimated that there are 42,325 people in the UK aged between 30 and 65 who have been diagnosed with young-onset dementia or ‘working-age’ dementia. (Ref Dementia UK, 2nd edition 2014, Alzheimer’s Society). They represent around five per cent of the 850,000 sufferers.
There has been much coverage in the media this month of the story of Becky Barletta, The ski instructor was diagnosed last August with frontotemporal dementia at 31, just months after her wedding, in one of the youngest cases doctors have ever seen. Just over 12 months after diagnosis, her decline has been rapid and she is now being cared for by her parents at their farmhouse home. Her father, Mr Sharples revealed that his daughter’s life expectancy is now just five years.
The family has begun a fundraising campaign to raise donations for the Alzheimer’s Society’s research into the condition.
They wrote on a crowd-funding site: “There is currently no cure or treatment for any dementia or even treatment to stop or slow its progression.
“We need to change this as soon as possible and can only do this through research and raising money to support this research.
“Whilst, unfortunately, this will not help Becky, we know she would want us to try and halt this vile disease in its tracks for the benefit of the future generations in our family and other families who have been affected by dementia.”
Common types of dementia in younger people
• Alzheimer’s disease is the most common form of dementia in younger people, accounting for around a third of young people with dementia.
• Vascular dementia is the second most common form of dementia in young people. Around 20 per cent of young people with dementia have vascular dementia.
• Around 12 per cent of young people with this diagnosis has frontotemporal dementia. It most commonly occurs between the ages of 45 and 65. In about 40 per cent of cases, there is a family history of the condition.
• Korsakoff’s syndrome – around 10 per cent of dementias in young people are caused by a lack of vitamin B1 (thiamine), most commonly associated with alcohol abuse.
• Around 10 per cent of young people with dementia have dementia with Lewy bodies.
• Around 20 per cent of young people with dementia have a ‘rarer’ form of the condition. Examples include conditions such as Parkinson’s disease, Huntington’s disease and Creutzfeld Jakob disease.
Would you be prepared?
Younger people are more likely to still be working when they are diagnosed. Many will have significant financial commitments such as a mortgage. They often have children to care for and dependent parents too.
It is never too early to plan ahead
While Becky’s case is upsetting, it highlights the importance of making plans for the future as early as possible. Safeguard your future now by taking a few simple steps. Drawing up a lasting power of attorney would mean that your loved ones can step in and manage your affairs if you can’t. Having a will in place will give you the choice of who inherits your estate and on what terms. Despite it being difficult to discuss, in addition to providing you with peace of mind, putting plans into place at an early stage mitigates the risk of unforeseen life circumstances resulting in decisions being made that are not in line with your wishes.
If you are affected by any of the issues raised in this blog, please contact Sarah Mellor on 01782 205000 or firstname.lastname@example.org