Young onset dementia: Diagnosis and early stages
Early signs of young onset dementia
Often, the early signs of dementia in a younger person are attributed wrongly to stress, depression, bereavement or normal ageing. Interestingly, loss of memory may not be the first change the person notices or complains about. Instead, they may find they are sleeping more, for example, or becoming uncharacteristically short-tempered or disinterested in things around them.
The first year we found out about dad’s dementia was incredibly difficult. No one knew what was going on. It was such a relief when we found out the diagnosis.John Brady, son of Ian Brady, Alzheimer’s Society ‘Living with dementia newsletter’, June 2010
Some people lose their judgement about what is appropriate. Lynn Jackson was in her mid-40s working in a ‘dream job’ in Mexico City when she was diagnosed with fronto-temporal dementia. She had to give up her job when the dementia caused her to swear excessively at work (this disinhibited behaviour is a feature of fronto-temporal dementia). Lynn went on to set up Dementia Advocacy Support Network International (DASNI) – a worldwide organisation run by and for those diagnosed with dementia (for more on this, see the feature, ‘Living with young onset dementia’ in this section).
Often a person notices a change in their ability to do something that they had always done quite easily. For example, one young man has described the impact of diminishing cognitive function on his ability to teach:
I was struggling at work. I was losing track and losing control of the class which is something I had never done. I became disorganised, which again is something I have never done.Dementia: Out of the shadows, Alzheimer’s Society 2008
The case for obtaining a diagnosis
Research suggests that the average life expectancy for a person when diagnosed with dementia is between four and eight years. Given this, and the potential for misunderstanding and stress caused by the early signs of dementia – particularly within a family and with colleagues at work – it is important that a person is assessed and given a diagnosis as early as possible.
In England and Wales ideally this process takes place in a memory clinic with specialist medical staff and health professionals who are trained to diagnose dementia and treat and support those affected. The 2009 National Dementia Strategy for England has emphasised the importance of memory clinics as a key way of ensuring early diagnosis, and so the number and quality of these services are likely to increase in the coming years.
Individuals and family members may feel a sense of relief when they learn the diagnosis. For many people, it can help to know what’s wrong so they are better placed to plan for the future.
Difficulties getting a diagnosis
A 2008 Alzheimer’s Society report quotes one GP saying to a female patient,
You can’t have dementia, you’re too young.
This quote reveals that doctors and other professionals quite often may not even consider that a person under 65 could have dementia – they may be more likely to think there is nothing wrong or that the person is depressed. In many areas, it may be unclear which medical consultant is responsible for the assessment and diagnosis of young onset dementia (also called ‘early onset dementia’ or ‘working life dementia’) – should it be a psychiatrist working with adults with mental health problems, or should it be an old age psychiatrist who specialises in working with older adults? GPs may not know this information. For all these reasons, obtaining a diagnosis is often a particularly drawn-out and distressing process for younger people.
Support at the point of diagnosis
Someone in their 40s or 50s does not expect to become forgetful and confused and then be told they have a progressive terminal condition such as dementia. For many younger people with dementia and their families, this is a very traumatic time, when feelings of uncertainty, grief and loss are particularly acute. Watch SCIE Social Care TV video Young onset dementia: living at home with nursing support. In this video Jim talks about the painful process that eventually saw his wife, Jan, be diagnosed with young onset Alzheimer’s.
The person and their spouse may well need counselling or extra emotional support to cope with the diagnosis. Counselling is available on the NHS but a younger person with dementia would only be referred for this if they were showing signs of severe anxiety and/or depression, which they may well be. Some families may seek private counselling or perhaps more commonly turn to a charity like the Alzheimer’s Society for emotional support. The Alzheimer’s Society’s factsheet 445 Talking therapies (including counselling, psychotherapy and CBT) has more information on this.
There are a growing number of community-based services specifically for younger people with dementia, which provide emotional support. For more on this, see the feature, ‘Services and support for younger people’ in this section.
Making plans for the future
When a person learns that they have dementia, they will often begin planning for their future in formal ways, as well as making plans for holidays and family time.
For a person who is working and has substantial financial commitments – perhaps a mortgage, pension, life insurance and so on – a diagnosis of dementia will mean a drastic change of circumstances. The advice of a financial adviser could help.
A person can give a named individual (attorney) the power to make specific decisions on their behalf if there comes a time when they are unable to make them themselves. This is known as a Lasting Power of Attorney. There are two types: one relates to property and affairs, the other to personal welfare (including medical treatment). For more on this area, see the feature on ‘Advance care planning’.
Each person’s living arrangements will vary: some will live alone, some with a partner or spouse, and perhaps school-age children too. Spouses and partners may or may not be able to take on a full-time caring role, given other commitments such as work and ageing parents. According to research, a person who lives alone is more likely to move into a care home sooner than someone who lives with their spouse or carer.
Each person and their family members will deal with the condition and support each other in different ways.
A person’s capacity to control a vehicle safely does decline if they have dementia. Once someone has been diagnosed with dementia they are legally obliged to tell the Driver and Vehicle Licensing Authority (DVLA) of their condition. The diagnosed person then has to take a driving test each year in order to continue driving a car.
Inevitably there comes a point when a person with dementia has to stop driving, either because they find it too stressful or because they lose confidence and/or the ability to do so. No longer being able to drive can be a catastrophe for many younger people and their families, especially those living in rural areas where public transport networks are more limited. Research from America suggests that if a person with dementia is no longer able to drive this is likely to lead to less social contact and a sense of loss.
The voting rights of people with dementia are often overlooked. A younger person with early dementia may still want to vote in national and/or local elections. As long as the person understands the process and consequence of voting, and can choose candidates, they have a right as a citizen to do so.
Building a new life after diagnosis
Despite the progressive and terminal nature of dementia, many people do find ways to cope with the diagnosis and get on with their lives.
Some people find a sense of purpose after diagnosis through joining with others to campaign for a better deal for people with dementia (for more on this see the feature ‘Living with young onset dementia’ in this section). Others prefer to carry on doing things they have always done such as gardening, going to the pub or fishing.
It is important that a younger person has the chance to try something new. Some might want to explore their creative side and become artists or singers. Others may want to try something more active and adventurous (like hill walking or even zip wiring!), visit a place they have never been, or take on a new role or responsibility (such as volunteer). The point is to help the person find an activity that is meaningful for them and to assist them to do it.
All SCIE resources are free to download, however to access the following downloads you will need a free MySCIE account:
- QCF Mapping: Diagnosis and early support for younger people
- Activity: Diagnosis and early stages for younger people
- What the research says: Early onset dementia
Further reading Open
Alzheimer's Society (2008) Dementia: Out of the shadows, London: Alzheimer's Society.
Alzheimer's Society (2010) 'Family ties', Living with dementia magazine, June.
Alzheimer's Society (2012) 'Talking therapies (including counselling, psychotherapy and CBT)', London: Alzheimer's Society.
Wislowski, A. (2006) 'Voting rights for older Americans with dementia: implications for health care providers', Nursing Outlook, vol 54, pp 68–73.
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