Young onset dementia

What is young onset dementia?

Dementia is a term used to describe a collection of symptoms that occur when certain diseases or conditions affect the brain, resulting in a gradual decrease in the individual’s ability to remember, communicate, reason and think. Often thought of as a condition associated with old age, the likelihood of developing dementia certainly increases significantly as we get older. However, it can affect people in their 40s, 50s and 60s too, bringing its own set of considerations and concerns.

Young onset dementia, also referred to as ‘early onset’ or ‘working age’ dementia is considered when a person develops dementia before the age of 65, and it affects around 42,000 people in the UK today.[1] Depending on the type of dementia the person has, dementia in younger people can affect memory, thinking, perception, personality, mood and behaviour; everyone’s experience of the condition is different, and progression of the disease differs from one person to the next. 

Some aspects of young-onset dementia distinguish it from other forms, bringing added complications and making it more difficult for individuals, their families and even medical advisers to detect.

Case study: 'Not enough people are aware of early onset dementia, never mind understand it' Read Debbie’s story on Alzheimer’s Society’s blog

The impact of young onset dementia

Any dementia diagnosis can have a profound effect on the individual and those around them, but according to Alzheimer’s Society, there are important differences in how dementia affects younger people, including what causes it. For example:

• A wider range of diseases can cause young-onset dementia.
• A younger person is much more likely to have a rarer form of dementia.
• Younger people with dementia are less likely to have memory loss as one of their first symptoms.
• Young-onset dementia is more likely to cause problems with movement, walking, co-ordination or balance.
• Young-onset dementia is more likely to be inherited (passed on through genes) – this affects up to 10% of younger people with dementia.
• It can be harder for a younger person to accept they may have dementia if they are otherwise fit and well.

Crucially, someone who develops dementia at a younger age needs to adjust to living with a long-term condition at an earlier stage in their life. They may be in employment and concerned about the effect on their working life and finances; they are more likely to have children at home and/or parents who they care for; and they may worry about the impact on their relationship. And given the genetic link with some cases of early-onset dementia, they may also be worried that any children or siblings will have a higher risk of developing the condition.

All this adds up to a lot to deal with, on top of the day to day management of their symptoms. Spotting the signs early and getting the right diagnosis is important to allow people to access the treatment and support they may need and carry on living life to the full.

Symptoms of young onset dementia to look out for

Often with Alzheimer’s disease and other forms of dementia (though not all), memory loss and confusion, together with age, are the initial tell-tale signs that someone may be affected by the condition.  But there are other symptoms to be aware of. Depending on the type of dementia a person has, and which parts of the brain it affects, these can include experiencing difficulty with any of the following:

• day-to-day memory – for example, difficulty recalling events that happened recently
• concentrating, planning or organising – for example, difficulties making decisions, solving problems or carrying out a sequence of tasks (such as cooking a meal)
• language – for example, difficulties following a conversation or finding the right word for something
• visuospatial skills – for example, problems judging distances (such as on stairs) and seeing objects in three dimensions
• orientation – for example, losing track of the day or date, or becoming confused about where they are.

Diagnosing dementia

Getting an accurate and timely diagnosis of dementia can be particularly difficult for younger people. This may be because young onset dementia is relatively uncommon and unexpected in younger people who are otherwise healthy and active. As a result, symptoms may go unnoticed or misdiagnosed for some before the person finally receives a diagnosis of dementia. In addition, the first symptoms of young onset dementia could be attributed to other factors, such as stress, difficulties with relationships or work, depression, or the menopause, meaning the true cause may go undetected until all other options have been ruled out.

Case study: ‘I thought my dementia was menopause’ Read Marie’s story on Alzheimer’s Society’s blog.

Often, it’s only after someone receives a diagnosis that they and those around them can look back and spot the signs.

So, once you’re diagnosed, what’s next?

It’s important to remember that a diagnosis of dementia doesn’t mean you can’t continue to enjoy life and live well with the condition. But getting the support you need is key. Organisations such as Alzheimer’s Society, Dementia UK and Young Dementia UK all have lots of information to help you and those around you to adjust to a life that you hadn’t planned for or expected, but which, with planning, understanding and some practical changes here and there, can continue to be a fulfilling one.

And while there’s currently no cure for dementia, there are treatments available – and things you can do for yourself – that can help manage your symptoms and improve your quality of life.

Dementia treatments

Treatments for dementia include drug and non-drug treatments, support, activities, information and advice.

Dementia medication

There are a two main types of drugs available for certain types of dementia:

• Cholinesterase inhibitors – donepezil, rivastigmine, and galantamine
• Memantine 

They work in different ways to improve the brain’s ability to send and receive messages between nerve cells and may help prevent the decline of memory and thinking for a while in some people, although the person’s symptoms will start to get worse again in time.  

These drugs may be prescribed for people with Alzheimer’s disease, Lewy body dementia (including Parkinson’s disease dementia) and any mixed dementia that features one of these components. Unfortunately, no drugs have been shown to improve cognitive symptoms of vascular dementia or frontotemporal dementia.

Before prescribing a cholinesterase inhibitor, the GP may want to assess the patient’s heart by carrying out an ECG test. This is because these drugs can slow down the person’s heartbeat slightly and, in people with existing heart problems, this could lead to dizziness and increase the risk of falling.

If you’re prescribed drugs for your dementia, you may not feel the benefits right away and you should be aware that they do not work for everyone that tries them. Some people find that the medication has side-effects, such as sickness or dizziness. These often get better after a few weeks, but if they don’t then it might be worth discussing switching to one of the other drugs with your GP. It’s important to remember that, while these drugs can help some people, they are not essential or life-extending. The person can decide not to take them if they are clearly not improving their symptoms or are causing unpleasant side effects. However, any changes to medication should always be discussed with the GP first.[2]

Non-drug treatments/person-centred care

Although drugs can help, the most important thing is to get the right support and care to enable you to live as well as possible. This includes trying a range of activities that help keep the brain stimulated and engaged. They may include group activities that help maintain your social interactions with other people, activities you can do on your own or at home, or therapeutic treatments. 

At the most basic level, being physically and socially active, eating well and making healthy lifestyle choices such as not smoking and not drinking too much alcohol can all help to keep your brain as healthy as possible.

Alzheimer’s Society lists the following activities that can be useful for keeping a person with dementia socially and mentally engaged.

• Cognitive stimulation therapy (CST) - CST is a range of activities that help to keep the brain active. You might do puzzles, talk about the news, or do something creative like painting or singing.
• Cognitive rehabilitation - a professional will work with you to do something you’re finding difficult. This gets parts of the brain that are working to help the parts that are not.
• Life story and reminiscence work - these treatments can improve your mood, wellbeing and memory. Life story work uses a scrapbook, photo album or app. You record and talk about important things from your life, to help remember them. Reminiscence work uses photos, objects or music to talk about your past.
• Music and creative arts - being creative can help and making music, dancing and painting can keep the brain active. You might want to try an Alzheimer’s Society Singing for the Brain group.
• Complementary therapies – aromatherapy, massage or bright light therapy can be used as well as other treatments. Although there is little scientific evidence that these therapies are effective in reducing the symptoms of dementia, many people find them relaxing or calming activities. If you're interested in trying them, talk to your GP first to make sure they’re appropriate and always make sure the therapist is properly trained.[3] You can search for a reputable practitioner in your local area using the Federation of Holistic Therapists (FHT) Complementary Healthcare Therapist Register, which is accredited by the Professional Standards Authority for Health and Social Care.

Talking therapies

Talking therapies can give a person with dementia the chance to speak openly about their feelings, including how they feel about a recent diagnosis. This can help them adjust and live with their condition more successfully. Sometimes it can be done along with a spouse or family member so they can work through relationship issues that may have developed since the person developed their condition, helping them to adjust to their new situation. Some people might find it helpful to discuss problems with a therapist rather than their friends or family members. A therapist can give them a safe space to explore the reasons why they feel how they do. This can be comforting. It can also help them maintain healthy relationships with their friends and family members.[4]

Supporting someone with young onset dementia

If you have little or no previous experience of dementia, the Alzheimer’s Society’s Dementia Friends programme is a great place to start. Designed to transform people’s often misguided perception of dementia, it provides some valuable insights that can help inform the way we all think, and more importantly, act to support those affected by the condition. Find out more about Dementia Friends and how to get involved here.

In the early stages of dementia, many people are able to continue to live their lives in much the same way as before their diagnosis, but there are some aspects of being diagnosed with early onset dementia that someone is likely to need extra help with:

Coming to terms with their condition

A dementia diagnosis at any age can be devastating and will require a period of acceptance and adjustment for the person diagnosed and those around them. Someone with young onset dementia is likely to need extra help to deal with worries about finances, dependants and their life expectations.

This is where the information and support provided by organisations such as Alzheimer’s Society, Young Dementia, Dementia UK, and the NHS really come into their own. Talking therapies can be particularly helpful at this point, as can connecting with others with the same condition via support groups and online forums These allow people to share their feelings and experiences and know they’re very much not alone.

Dementia and work

Younger people with dementia are likely to be in employment and concerned about the impact of their diagnosis on their current role, or future employability as their condition progresses. In fact, many people can continue to work and are able to do so for many years after their diagnosis. Continuing with work has many benefits: it can help to maintain self-esteem, social connectedness and to help keep the brain active, as well as providing an income. But staying in work won’t be possible or the right choice for everyone. It’s important to be as honest as you can with your employer, to identify what support is available and discuss your options moving forward. Take a look at Alzheimer’s Society’s information on how to tell your employer about your diagnosis for help with this. Further support is available through government schemes, such as ‘Access to Work’, which can provide funding that gives people with dementia extra support in work. Some people may also have access via their employer to services such as HR, Occupational Health (OH) or an Employee Assistance Programme (EAP), that can provide invaluable support.

Resources for financial and legal support

Being diagnosed with dementia at a younger age is likely to have a considerable effect on someone’s income, their current commitments – particularly if they have dependents to support – and financial planning for the future. This is particularly so if they give up work earlier than planned. If you’re concerned about the impact of your diagnosis on your income, the following may help: Citizens Advice and MoneyHelper. MoneyHelper brings together the support and services of three government-backed financial guidance providers: the Money Advice Service, the Pensions Advisory Service and Pension Wise, making it easier to find the help you need, all in one place. The Pathways through Dementia website is another a useful source of free, accurate legal and financial information.

Alzheimer’s Society, the UK’s leading dementia charity are one of AXA UK’s chosen charity partners. Through our partnership we will be raising money to fund vital research which was forced to stall because of the pandemic. We are now helping dementia research get back on track by supporting 5 incredible projects funded by some of the biggest names in the field. 

The content in this article has been developed with Alzheimer’s Society. For further information and to find out how you can access support you can visit alzheimers.org.uk. To find out more about Corporate Responsibility at AXA UK, visit our CR page here.

Further information from AXA health

You may find the following AXA Health resources useful:

Tips to delay dementia and boost your brain power | AXA Health

Supporting a loved one with dementia | AXA Health

Mental health hub | AXA Health

References

1. What is young onset dementia? Dementia UK. Retrieved here: What is young onset dementia - Dementia UK. (Accessed June 2021)

2. Drug treatments for dementia. Young Dementia UK. Retrieved here: Drug treatments | YoungDementia UK. (Accessed June 2021)

3. Person-centred care. Alzheimer’s Society. Retrieved here: Person-centred care | Alzheimer's Society (alzheimers.org.uk). (Accessed June 2021)

4. Benefits of talking therapies for people with dementia. Alzheimer’s Society. Retrieved here: Talking therapies | Alzheimer's Society (alzheimers.org.uk). (Accessed June 2021)