Living with young onset dementia
Understand the person and how the dementia affects them
Do not make assumptions about how the person is feeling or what they might be going through – each person’s experience of living with dementia is different and is likely to change over time.
Many factors play a part: the form of dementia the person has, whether they have any other form of disability, their marital status, their circle of friends, where they live, their educational background, personality, personal wealth, former career, age, ethnicity and so on. Any one or a combination of these factors can affect a person’s ability to deal with the changes they experience.
To gain an understanding of what it is like for a younger person to be diagnosed with dementia and to learn how the condition affects their lifestyle, why not read an autobiography by a person with dementia? Several autobiographies have been published, all written by people under the age of 65, including for example: Dancing with dementia: My story of living positively with dementia by Christine Bryden; Just love me: My life turned upside down by Alzheimer’s by Jeanne Lee; and Alzheimer’s from the inside out by Richard Taylor.
With a lot of hard work, a wonderful doctor, the passage of time, love from family and friends and other people with dementia, I have for the most part overcome this stigma.Lynn Jackson, a woman with fronto-temporal dementia
Alternatively, you could search online video channels such as You Tube or Vimeo using the terms ‘younger people with dementia’ and watch the films you find, such as those produced by the Alzheimer’s Society. One particular film we would recommend is Agnes and Nancy directed by Anne Milne and starring ‘Agnes Houston’ – it is 23 minutes long.
You may also be interested to read the section, Getting to know the person with dementia, which is full of contributions from people with dementia talking about what it’s like to live with dementia.
Physiological changes with dementia
A person with dementia will experience physiological changes – that is, changes within their body – as the dementia slowly affects different parts of the brain. Many people with dementia report that they tire easily; this fatigue is due to the extra demands the illness places on their cognitive processes. Dementia affects the parietal lobe – or the body-senses lobe – so a person will often experience strong emotions and sensations within their body that they cannot explain or predict. For instance, Diana McGowin (who began having symptoms of Alzheimer’s disease at the age of 45) experienced changes to her sex drive: it increased so dramatically that it became a problem for her and her husband (1994).
Dementia also affects the occipital lobe or the visual lobe. This is the bit that lets us see and also processes what we see. Damage to this area of the brain means that people are unable to interpret what they see properly, and see shapes and shadows instead of meaningful objects. It is why someone with dementia might see patterns on a carpet as a moving entity, such as spiders crawling on the floor. Visual disturbances are one of the earliest symptoms of dementia but they often go unnoticed by other people.
Changes to social life
Another area of change is to a person’s social network (their family and friends). People with dementia and their families often say, ‘You find out who your friends are when you’re diagnosed with dementia’. They report feeling that people avoid them once they found out they’ve had a diagnosis.
On a positive note, people often make new friends (for example other people affected by dementia) as and when they make contact with organisations like the Alzheimer’s Society, Lewy Body Society or Frontotemporal Dementia Support Group. Some couples report an improvement in their marriage following a diagnosis of dementia, perhaps because they both have something to ‘rally around’ and deal with, particularly after what has usually been a long period of uncertainty and stress.
Maintaining physical health
Physically, younger people with dementia are usually fit and healthy. They are not yet prone to age-related ailments such as hearing loss or arthritis and may have just taken early retirement from a physically active job like teaching or farming. It is important that a younger person is assisted to maintain their physical health and wellbeing for as long as possible. This can be achieved in many ways. There are endless opportunities for younger people to engage in organised activities to keep up their physical health, from guided walks to fundraising events organised by the Alzheimer’s Society. The Dementia Adventure initiative highlighted in the feature Services and support for younger people in this section is another example.
Health prevention and promotion strategies also help to ensure a person maintains their physical health. Having dementia does not make people immune from other illnesses and conditions. The NHS has a range of health screening which men and women with dementia are entitled to and should be supported to take advantage of. The following are just a few examples: breast screening for women aged 50 years and over (the programme will be extended to women aged 47 years and over from 2012), cervical screening, which continues for women until they reach the age of 64; and eye tests, which are free for people aged over 60.
Someone with dementia may forget or miss these invitations to screenings and appointments and may need reminding or assistance to go, particularly if they live on their own.
Another important way of maintaining physical health is through nutrition. For more on this, see the ‘Eating well’ section.
Campaigning for a better deal
Without something meaningful and challenging to do in life, a person’s health and wellbeing are likely to deteriorate more quickly. Many people with dementia – including younger people with dementia – are finding a valuable role in campaigning for a better deal for people with dementia from society and from the services they receive or may one day receive. Dementia campaigning organisations can give people a real sense of achievement and purpose in life.
The Scottish Dementia Working Group (SDWG) is one example. James McKillop set up the SDWG in 2002 after he was told he could not attend a dementia conference, even though he had dementia. He thought a campaign group might change that and raise awareness of the social exclusion that people affected by this condition often face. Now, the SDWG has over 100 members, all of whom have a diagnosis of dementia.
The SDWG seeks to influence policies and attitudes about dementia. The group employ a paid support worker to assist the smooth running of the group, which is based in Glasgow and has strong links with Alzheimer Scotland. The group is extremely active and members meet regularly. The group continues to evolve. It has produced DVDs to raise awareness among health professionals and the general public (including: Listening to the experts, and more recently, Through our eyes: A life with dementia), a joke book, a website and an annual newsletter. A core group of members regularly speak at national and international conferences.
DASNI (Dementia Advocacy and Support Network International), a worldwide organisation run by and for those diagnosed with dementia, is another example of a campaigning organisation. DASNI was set up in 2000 by a small group of people with dementia committed to making their shared dream of respect and better services for people with dementia a reality. In October 2003, mainly as a result of campaigning by DASNI members, the first person with dementia was elected to the Board of Alzheimer’s Disease International. About a third of DASNI members have dementia, and many of these have written books, created their own websites and spoken at conferences throughout the world.
While these are good opportunities for people with dementia to experience empowerment and to make a difference, they are cognitively demanding and extremely tiring. Thus people need proper support and understanding (particularly of how exhausting it can be) in order to participate effectively. This may mean having a quiet room available for them to retreat to if necessary or ensuring that both the person with dementia and their carer are financially and practically supported.
Teaching, training and speaking to the media
Increasingly people with dementia are becoming involved in teaching health and social care staff. Through talking to nursing, social work and medical students about their experiences of living with dementia they are helping to break down some of the negative stereotypes and stigma that still exist. See the article by Hope and others (2007) for more details of this development.
In a similar way, the Alzheimer’s Society invites members with dementia to become a media volunteer and have their stories appear in the media to help portray a realistic story about what it’s like to live with dementia.
Evaluating and shaping services
Other opportunities include being involved in the evaluation of services and helping to influence the shape of local and national policies. People with dementia were involved in the development of both the English and Scottish National Dementia Strategies.
Individuals with dementia who speak out
Dr Richard Taylor was diagnosed with Alzheimer’s disease in the mid-1990s when he was 58 years old. Dr Taylor has his own website, produces a newsletter and speaks at dementia conferences throughout the world. He now says that, ‘thinking, speaking, and writing about what it is like for me to live with this condition has become the purpose of my life’.
Another important figure is Christine Bryden, an Australian woman who was diagnosed in 1995 at the age of 46. She has written two books about her experiences and speaks at major conferences throughout the world. Visit Christin Bryden's website.
Dr Daphne Wallace, a retired old-age psychiatrist, was diagnosed with early vascular dementia in 2005. She is currently co-chair of the National Dementia Strategy for England Implementation Reference Group and an extremely active member of the Alzheimer’s Society.
Obviously not every younger person will want to get involved in public life to this extent. It is perfectly natural for some individuals to want a quieter, more private life, which should be respected. The issue is not to assume a person cannot or would not want to be active in their local community just because they have dementia.
Activities as dementia progresses
As dementia progresses and the person’s ability to enjoy new interests and take on new roles and responsibilities changes, so too must the opportunities that are provided. For example, a person living in a care home might be given a role working in the garden or welcoming visitors when they arrive.
The point is opportunities for growth and for taking control should not stop simply because a person has been diagnosed with dementia. As long as the person can comfortably handle their roles and responsibilities, and does not become too fatigued, these sorts of activities can relieve boredom and counter some of the effects of dementia, such as loss of confidence.
All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:
- Activity: Living with young onset dementia
- What the research says: Early onset dementia
Further reading Open
Bartlett, R. and O’Connor, D. (2010) Broadening the dementia debate: Toward social citizenship, Bristol: Policy Press.
Braudy-Harris, P. and Keady, J. (2009) 'Selfhood in younger onset dementia: transitions and testimonies' Aging and Mental Health, vol 13, no 3, pp 437–44.
Cantley, C., Woodhouse, J. and Smith, M. (2005) Listen to us: Involving people with dementia in planning and developing services, Newcastle: Dementia North, Northumbria University.
Hope, K., Pulsford, D., Thompson, R., Capstick, A. and Heyward, T. (2007) 'Hearing the voice of people with dementia in professional education', Nurse Education Today, vol 27, pp 821–24.
McGowin, D.F. (1994) Living in the labyrinth: A personal journey through the maze, New York: Delacote Press.
Page, S. and Keady, J. (2010) 'Sharing stories: A meta-ethnographic analysis of 12 autobiographies written by people with dementia', Ageing & Society, vol 30, no 3, pp 511–26.
Weaks, D., Wilkinson, H., Houston, A. and McKillop, J. (2012) Perspectives on ageing with dementia, York: Joseph Rowntree Foundation.
Useful links Open
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including What is young-onset dementia (440), Explaining dementia to children and young people (515) and Rarer causes of dementia (442). It has also published a position statement on What is young-onset dementia?, maintains a database of services for younger people with dementia, and has a forum within its online community, Talking Point (for people with dementia and their carers), specifically for younger people with dementia.
Rare Dementia Support
Rare Dementia Support is a specialist support service for people living with or affected by one of five rare dementia diagnoses: familial Alzheimer’s disease, frontotemporal dementia, familial frontotemporal dementia, posterior cortical atrophy (PCA) and primary progressive aphasia (PPA). The service offers support group meetings, telephone contact networks, websites and access to information and advice and is based at the Dementia Research Centre at UCL’s Institute of Neurology. It was previously known as the Fronto-temporal Dementia Support Group.
The aim of this website from scientists at University College London is to make frontotemporal dementia (FTD) easy to understand for anyone with an interest in FTD. The site includes a dozen factsheets related to various aspects of FTD, available to download for free.
This Oxford-based service offers care and support for younger people with dementia and their families. It was begun by Helen Beaumont whose husband Clive had young onset dementia. The YoungDementia UK website has information on young onset dementia.
Younger people with dementia: living well with your diagnosis
This resource from NHS Health Scotland was developed in partnership with younger people with dementia and carers. It covers a range of key information areas (such as home, health, independence, work and money) and includes links for finding out further information. The resource was first published in 2013 and revised in 2017.
Related pages from this section Open