How to live with early-onset dementia

Posted on May 20, 2019
How to live with early-onset dementia
7 min read

What is early-onset dementia?

Many people think that dementia is a disease that only affects the elderly population, however the condition can also affect people under 65 years old. In these cases, it is known as early-onset dementia, also called young-onset or younger-onset dementia or waking-age dementia.

It is difficult for anybody to accept that they get a diagnosis of dementia. For people with early-onset dementia it can be particularly hard, since dementia is usually associated with an older age. There are thought to be more than 42,000 people with young-onset dementia in the UK, but it is a condition that leads many to feel isolated and alone.

The symptoms of dementia do not necessarily change according to the age people develop the condition. However, while memory problems and forgetfulness are the most commonly known early symptoms of dementia, younger people with early-onset dementia may experience behavioural problems or issues with their language or vision. Problems with movement, balance and co-ordination, including difficulties walking, can also be symptomatic of early-onset dementia.

Furthermore, early-onset dementia is more likely to be a hereditary disease. If someone has inherited the condition from their parent, there may also be considerations about whether their children or siblings may also develop dementia. Talking to specialists, such as the staff at a Memory Clinic, will help those around the dementia sufferer to understand the risks they, too, may face.

How early-onset dementia can affect your life

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Apart from symptoms, there are some differences in the help and support that younger people with dementia need compared to older people with the same condition.

Younger people with dementia are more likely to be working when they are diagnosed with the condition. The diagnosis can have a profound effect on somebody’s work prospects and their ability to continue with their job.

Speaking to Occupational Health as soon as possible following a diagnosis of young-onset dementia is a good idea, as is having regular reviews so that, ideally, your job role can be adapted to deal with any new symptoms you develop. So, if you are experiencing trouble with your speech, the need to make phone calls could be delegated to somebody else, for example, while you took on responsibility for a task you were still confident with.

The partner of a person diagnosed with young-onset dementia is also likely to be in work when a diagnosis takes place. This can be beneficial, as it reduces the financial implications of one party losing their ability to work, but it does mean that the partner is less able to help with growing caring responsibilities as they arise.

Similarly, a person with early-onset dementia may still have dependent children or older parents for whom they have caring responsibilities. Many people with new diagnoses worry a lot about how their condition will affect their children, and the prospect of them becoming young carers is a concern that many do not want to face up to. However, your children can help you out in a way that is appropriate to their age and maturity, and you will still be their parent, even if you become more unwell.

In the same way, your parents may need to take on carers of their own if you are struggling to care for them as well as yourself. There are many care options available such as at-home care and respite care that they will want to consider.

There is a strong chance that, as a person diagnosed with younger-onset dementia, you may also have serious financial responsibilities like a mortgage to keep paying. Looking at any insurance you have taken out, and speak to the lender or the Citizens Advice Bureau to see if payments can be temporarily reduced, as this can be an effective way of dealing with this additional stress without getting into more debt.

To sum up, when you or somebody you love is diagnosed with early-onset dementia, you will want to consider the following:

  • Stigma: many people have unusual ideas about what dementia means and may misunderstand the condition, especially when it affects younger people. Raising awareness about what younger-onset dementia is, perhaps by raising funds for a relevant charity or sharing information on social media, can be effective ways of both spreading the word and reducing the stigma of the condition.

  • Whether it is hereditary: if you or someone you love is diagnosed with a hereditary form of dementia and you have children or siblings, you may be worried about whether or not others can inherit the condition. Those relatives, too, may be concerned. The best way to allay these fears is to speak to somebody with specialised understanding of the condition and the different forms of dementia, so that your relatives are informed and knows what signs to look out for if they are concerned.

  • Developing the disease while being in work: the prospect of losing employment and income is a big worry for a lot of people diagnosed with early-onset dementia who, perhaps, had had no plans of retiring early. See if Human Resources or Occupational Health can help to adapt your job to suit your current capabilities (and review this in the future on an ongoing basis) or, if necessary, contact the Department for Work and Pensions (DWP) or the Citizens Advice Bureau for information about benefits and pensions you may be entitled to if you become unable to work.

  • Driving: many people associated driving with independence, and nobody relishes the prospect of losing their driving licence because of a health condition. Despite this, it is important to be very open with your health professionals and talk honestly about whether your early-onset dementia is affecting your ability to drive safely. You never want to put any other road users or pedestrians at unnecessary risk. In a world with taxis available at the push of a button, losing the ability to drive does not mean that you will be unavoidably confined to your home like it used to.

  • Having to look after your own older parents while affected by the disease: if you have been a caregiver for your parents and now have developed early-onset dementia, your ability to look after them may become impaired over time. Now might be the time to talk to siblings or other family members to see if responsibilities can be shared, and to look at professional carers who can come in as and when you need them.

  • Dealing with childcare: just as you may need to get outside help to manage caring for elderly parents, you may also need to look into some additional childcare support if you find you are struggling with looking after your children. Social services may be able to offer help in this area, or private childcare providers can do tasks like picking your children up from school. As your children get older, they will become more responsible and may even be able to help you out when you need it.

  • Telling your children you have dementia: this can be incredibly tough, as you do not want to worry your kids or make them distressed. The way you talk to your children will depend on their ages, but practising the conversation with somebody you trust can be a good way to anticipate any questions they may have. Then, when you talk to your children, you can feel more confident about explaining your condition in a way that is honest but not frightening.

  • The effect it has on your social circle: some people will find that a diagnosis of early-onset dementia means that friends flee their social circle because they do not know how to address it or how to cope. However, though this is a tricky time, it is also one when you will find out who your true friends are – and you may be surprised by those who stick around. Provide as much information as your friends ask for, and answer any questions they may have. These are the people who could be an absolute blessing to you in the coming months and years.

Treatment for people with early-onset dementia

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If you are diagnosed with early-onset dementia, somebody at the Memory Clinic will talk to you about the treatment options that are available to you. There may be drug treatments or non-drug treatments, according to what is appropriate to your specific circumstances.

Drug treatments vary according to the type of dementia you have (such as vascular dementia or Alzheimer’s disease) and non-drug treatments might include talking therapies to help you to come to terms with your diagnosis of dementia or cope with symptoms of anxiety or depression that you may experience. You might also want to look at couples counselling if the diagnosis affects your relationship significantly.

There currently is no cure for dementia. However, keeping physically healthy can potentially help to slow down the progression of the symptoms of younger-onset dementia. So keep active, eat healthily and sleep well. If you smoke, now is really the time to quit, and drinking should always be done in moderation.

Support available

The Alzheimer’s Society guide to early-onset dementia can help you to find support and help in your local area for people with early-onset dementia. Your GP and social services can also be instrumental in signposting you to the best local services that can help you throughout your illness.

You can also speak to your family and close friends to ask for support if you feel isolated or alone, and always remember the importance of self-care when you feel low or you are struggling with the symptoms of your condition.

On our blog, you can find more information about how to cope with aggressive dementia behaviours, and about the difference between Alzheimer’s and dementia.

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