World Alzheimer’s Month: How much do you know about dementia?

Research Investigators Dr Melanie Hall and Professor Pat Sikes

Everybody knows about dementia don’t they? It’s Alzheimer’s disease and it affects old people — grandmas and grandpas in their 70s and 80s, who become forgetful and confused, need a lot of looking after and may even have to go into a home if it gets to the stage where their families and the ‘Dementia Friends’ in their communities are unable to care for them and keep them safe.

Well, yes, to some extent that’s right: Alzheimer’s disease in people over 65 is the commonest form of dementia and the numbers of those diagnosed with it are rising exponentially to the extent that, in 2015, David Cameron described it as one of the greatest challenges of current times. But do you know that there are also young onset variants of dementia which can begin to manifest when people are in their 30s, 40s, and 50s? These conditions include:

· vascular dementia,
· dementia with Lewy bodies (which the actor Robin Williams had),
· posterior cortical atrophy (experienced by Terry Pratchett, the Discworld author),
· fronto-temporal dementia (comedian David Baddiel’s dad has this, and David is committed to raising awareness through his work),
· young onset Alzheimer’s (as depicted in the film, Still Alice),
· and dementias associated with other illnesses like Motor Neurone Disease, Multiple Sclerosis, HIV/AIDS and alcoholism.

Although memory loss can be and usually becomes, a feature of these dementias, their primary symptoms often involve extreme behavioural changes such as aggression, social withdrawal, loss of empathy, exhibitionism, hyper-sexuality, short temper, obsessive compulsions, difficulties with planning and judgement making, visual disturbances, hallucinations, loss of physical capacity, aphasia and other communication disorders. Dementia is a progressive illness, throughout the course of which people inevitably get worse, losing functions, capacities and abilities. And then they die, unless they succumb to another disease in the meantime, because dementia, all dementias, are terminal.

Imagine being a child, adolescent or young adult whose mum or dad begins to behave oddly and in totally out of character ways. At first you find plausible reasons to explain why they don’t show any interest when you tell them about your day, or they start cooking cheap and nasty frozen dinners, or they splurge on an expensive boat when they’ve previously never had any interest in sailing. By the time a previously doting father grabs, twists, and almost breaks his little princess’s arm, the writing is likely to be on the wall: dementia.

Over the past 2 years, in an Alzheimer’s Society funded project, Pat Sikes and Mel Hall have been collecting the 22 stories from 6–31 year olds whose parent has or had a form of dementia. Two key messages to come out of the study are that:

1) These young people feel isolated and marginalised due to public ignorance of the forms dementia can take, who it can affect, and how the disease plays out,

2) Support services are not effectively geared up to cater for those with young onset dementias or their families.

Buck the trend. Start finding out about these conditions so that you can become a ‘Dementia Friend’ to the close people in your life, should the need arise. You could do worse than to begin here.

– Pat Sikes
Professor in Qualitative Inquiry, School of Education

Our Research

Recent information campaigns and sympathetic media coverage have sought to raise public awareness of dementia. The emphasis has been on describing and understanding Alzheimer’s disease in older people: this reflects dementia services provision and focus. However, the numbers of those diagnosed with early-onset dementia are rising.

The aim of our research is to focus on the perceptions and experiences of these children and young people with particular attention to any impact on their education and schooling.

Visit our Research Page for more information.

More information on World Alzheimer’s Month