What it's really like to live with dementia

May 19, 2017 by Catherine Bailey, Katie Brittain And Sue Tiplady, The Conversation
Dementia doesn’t have to mean the end of hobbies and interests. Credit: Pexels

More than 225,000 people develop dementia every year – that's roughly one person every three minute. At the moment, 850,000 people in the UK are living with dementia. This figure is set to rise to two million by 2051.

Dementia is a progressive disease of the brain that mainly affects older – although is not a "normal" part of ageing. Of the 850 000 known cases of dementia in the UK, some 40,000 are aged under 65.

It is a collection of brain diseases – with Alzheimer's the most common – and is not just about memory loss. Everyone experiences it differently, from behaviour change, to difficulty processing conversations, to confusion over everyday tasks – such as working out how to make a cup of tea.

As academics researching in this area with other organisations, we work directly alongside people living with dementia, as well as their carers, families and communities. And while we understand a lot about the disease – including how it affects a person's health and the impact it can have on their personal lives – we do not know what it's really like to live with dementia, day in, day out.

Gym and swim

This is why it's critical to listen to those who can tell it as it is – which is what a large part of our research is about. Susan Small who was a dementia support worker and a carer says:

People should not be defined by their dementia, but given opportunities and experiences to enjoy life and relationships – and indeed take a few risks now again. We need to learn to listen more to what the person with dementia is telling us.

It is important for people to get a correct, early diagnosis, as long as it is followed up with timely information and support. Too little information can leave the person with dementia and those close to them, feeling ill prepared – yet too much information can leave people fearful of their future.

Barbara Dow who cared for her husband Al and is now a dementia campaigner agrees, stressing that a timely diagnosis enabled them to plan for the future together. This meant they could move house to be nearer to family and facilities where they could both continue much loved hobbies such as dancing. She said:

Al continued to lead a full life to the best of his abilities. If he could not dance, then he could go to the gym and swim.

She also speaks of humour lessening frustration and maintaining self-esteem:

Al might forget who had just spoken on the phone. We used to say it was Mr or Mrs Whatsit, have a bit of a laugh together about it and then I would dial 1471.

My life, my terms

People living with dementia – and their carers – also speak of the need to emphasise what is achieved, rather than what isn't.

Ken Clasper, a university college engineer, was diagnosed with Lewy Body dementia at the age of 56. This is the same type of dementia that actor Robin Williams had and can cause depression, paranoia, Parkinson's disease and confusion.

Clasper told us that although he may need more time to process information, "please don't answer for me, just give me time". He suggests that it's also important for others to know the person with dementia, and for example, their -long interests and passions. He is a keen nature lover and photographer and bought equipment that helps him to continue to take photographs.

Other people with dementia have spoken of enjoying being outdoors on their own, and while this may cause some understandable anxiety to friends and family, they stress the importance of being able to "get on with life in their own way" – with family and community support.

Learning to adapt

These experiences show that much of living with dementia is about cycles of loss and adjustment, of change and adaptation – and of partial resolution. Partial, because life does not stay the same – we shift and change with circumstance as a is experienced and lived through.

As the Alzheimer's Society's campaign to unite against dementia succinctly portrays, how this indiscriminate disease can affect anyone.

How a person might live with dementia depends on who they are, their own individual diagnosis as well as their support network and connections. But it is important to remember that people can and do live well with dementia.

Of course, there will be peaks and troughs, good days and bad, but rather than just seeing everyone with dementia as "sufferers", or as "brave battlers" of a debilitating disease, it is important to remember that can be lived with as well. To do this, we need to listen to and learn from, those who know what it's really like – those people who have the actual lived experience.

Explore further: Dementia: The right to rehabilitation

Related Stories

Dementia: The right to rehabilitation

March 28, 2017
Rehabilitation is important for people with dementia as it is for people with physical disabilities, according to a leading dementia expert.

Incidence of dementia in primary care increased in the Netherlands over 23 years

March 7, 2017
The incidence of registered dementia cases has increased slightly over a 23-year period (1992 to 2014) in the Netherlands, according to a study published by Emma van Bussel and colleagues from the Academic Medical Center ...

New figures show dementia is leading cause of death in England and Wales

November 14, 2016
New figures released by the Office of National Statistics show that for the first time, Alzheimer's disease and other dementias are the leading cause of death for England and Wales. Of the 529,655 deaths registered during ...

Delirium could accelerate dementia-related mental decline

January 18, 2017
When hospitalised, people can become acutely confused and disorientated. This condition, known as delirium, affects a quarter of older patients and new research by UCL and University of Cambridge shows it may have long-lasting ...

Report highlights increase in Alzheimer's drug prescriptions

January 20, 2016
A new report released today shows that Alzheimer's drug prescriptions have increased six times in the last decade, the proportion of people receiving a dementia diagnosis has increased over the last year by 112 per 100,000, ...

Recorded deaths from dementia more than double in 13 years

September 30, 2016
New figures released today show the proportion of people dying with a diagnosis of dementia more than doubled in 13 years. According to reports published by Public Health England, 15.8% of all deaths recorded in 2014 had ...

Recommended for you

Major cause of dementia discovered

December 11, 2017
An international team of scientists have confirmed the discovery of a major cause of dementia, with important implications for possible treatment and diagnosis.

Canola oil linked to worsened memory and learning ability in Alzheimer's

December 7, 2017
Canola oil is one of the most widely consumed vegetable oils in the world, yet surprisingly little is known about its effects on health. Now, a new study published online December 7 in the journal Scientific Reports by researchers ...

Genetics study suggests that education reduces risk of Alzheimer's disease

December 7, 2017
The theory that education protects against Alzheimer's disease has been given further weight by new research from the University of Cambridge, funded by the European Union. The study is published today in the BMJ.

Healthy mitochondria could stop Alzheimer's

December 6, 2017
Alzheimer's disease is the most common form of dementia and neurodegeneration worldwide. A major hallmark of the disease is the accumulation of toxic plaques in the brain, formed by the abnormal aggregation of a protein called ...

Alzheimer's damage in mice reduced with compound that targets APOE gene

December 6, 2017
People who carry the APOE4 genetic variant face a substantial risk for developing Alzheimer's disease.

Lithium in water associated with slower rate of Alzheimer's disease deaths

December 5, 2017
Rates of diabetes and obesity, which are important risk factors for Alzheimer's disease, also decrease if there is a particular amount of lithium in the water, says the study, published recently in the Journal of Alzheimer's ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.