Living with dementia as a younger person

What are the main issues of living with dementia as a younger person?

Younger people with dementia experience a range of challenges, which are often different to those that older people face. Younger people are less likely to experience memory loss as one of their early symptoms and may experience problems with behaviour, vision or language first.

They are also likely to have varied aspects to their lives that will be affected in different ways by dementia. This includes:

• their relationships, including with their children (if they have them)
• their finances
• employment (if they’re working) and daily activities
• ndriving (if they drive)
• their hobbies and interests.

All of these can make it hard for a younger person to adjust to a diagnosis. Dementia can also be harder for younger people because it usually comes at a time in their life when it is least expected. However, there is support available and planning ahead can make a big difference.

If you’ve recently been diagnosed with young-onset dementia and want to know more about how it can affect you, read booklet 688, Young-onset dementia: Understanding your diagnosis.

Relationships

Dementia at any age can have a big impact on relationships. However, for younger people there are particular challenges that can affect their relationships with partners, family, friends and work colleagues.

Dementia can mean lots of changes to a younger person’s plans for the  future as they adapt to living with the condition. This can be difficult to  come to terms with for both the person and their family.

Dementia at any age can lead to questions about how roles in relationships will change. For younger people with dementia, this can be more challenging due to their commitments. For example, they may have a mortgage, young children and household duties they share with a partner or friend.

After their diagnosis, younger people with dementia and their families may find that friends and other family members don’t stay in touch or provide the support they need. This can be for different reasons. Dementia in a younger person is unexpected, so friends and family may not understand what the person and those close to them are going through. Giving people information, such as this page, can help them to understand and come to terms with things.

A partner or children of the person with dementia may end up providing more and more care for the person over time. This can be difficult to adapt to and can lead to a big change in the relationship.

For more information for people with dementia, see Your relationships.

Partnerships and sexual relationships

Partnerships and sexual relationships often change when one partner has dementia. Coping with and adjusting to these changes can be very difficult for younger people with dementia.

For more information on this see Sex, intimacy and dementia.

Some couples may find that their relationship has changed during the time it has taken to get a diagnosis. Issues with their relationship may have been what led them to the doctor in the first place. When one partner receives a diagnosis of dementia it means the couple will need to review how things currently work in their relationship and what changes are needed. As the person’s dementia progresses, more changes and adaptations will be necessary.

Children

Younger people with dementia are more likely to have dependent children, and dementia can have a huge impact on them and their family relationships. It can be hard to explain to children what the diagnosis means and how it might impact the family. It’s important to try and be honest with children, listen to their concerns and feelings and make time to answer any questions they have.

Children can find it difficult to come to terms with a parent having dementia. The person with dementia may feel guilty about the impact their diagnosis has on their children. It can also affect the relationships between other members of the family. There can be difficulties balancing the needs of the person with dementia, their children and other family members. For example, it can be a challenge to support children emotionally and help them cope with the changes in a parent. It can be particularly hard for the parent without dementia or other family members who will need to provide more support for the family, while also trying to meet the needs of the
person with dementia.

If the person has (or thinks they have) a genetic form of dementia, that can have a huge impact on their relationship with their children. They and their children may have questions about genetic testing and whether they should have it. The person may feel guilty about putting their children at risk. Children may be angry or unsure how to process this information. It’s really important that the family have access to appropriate support and counselling to deal with this. For more information see Types of genetic testing.

Employment

Many younger people say that their first symptoms of dementia appeared while they were at work. For instance, they might have started to have problems with remembering appointments or how to do something they’d been doing for a long time. They may also find it difficult to concentrate or follow conversations.

Some people continue working for many years after a diagnosis of dementia. Others decide to stop, either because they no longer want to work, or the type of work they do means they’re not able to carry on. Making this decision can be very difficult – work is important to people for lots of reasons aside from earning money. For many people their work is also part of their identity and gives them a community and sense of
purpose. Where possible, staying in some form of employment can have a number of benefits for people with dementia.

Younger people diagnosed with dementia should tell their employers about their diagnosis. In some jobs this is required by their contract. Their employer may be able to support them, for instance by enabling them to take extra breaks or to work from home. Under the Equality Act 2010 an employer must make ‘reasonable adjustments’ to support the person with dementia to do their job. For example, they might agree a change to working hours or move to a quieter part of the workplace. People have a
right to ask for the support they need.

Some people with dementia report being unfairly dismissed either before they received a diagnosis or because of their diagnosis. If a person feels they have been unfairly dismissed they may be able to make a complaint against their employer. There are organisations that can provide advice and support such as the Advisory, Conciliation and Arbitration Service (ACAS), the Equality Advisory and Support Service or the Equality Commission for Northern Ireland. For their contact details see Young-onset dementia - more resources.

People who are supporting a younger person with dementia can also find this affects their work situation. Some people find that, as dementia progresses, they need to change their hours or give up work altogether. As younger people are more likely to be still working this can be particularly challenging – both emotionally and financially. Carers do have rights when it comes to work, such as the right to request flexible working. They may want to discuss their options with their employer. They may also want to seek professional advice on what their rights are and what financial support they may be entitled to. For more information on ACAS, the Equality Advisory and Support Service, and the Equality Commission for Northern Ireland see Young-onset dementia - more resources.

For more information a person with dementia may want to read booklet 1509, Living with dementia - Employment.

Finances

Younger people with dementia often have a range of financial commitments that may be impacted by their diagnosis. For example, they may still be repaying their mortgage or other loans, or supporting dependent children. Dementia can cause worry and uncertainty about how they will manage financially in the future. If the person has to give up work this can have a financial impact, not just on them but on the rest of
their family.

There is financial support available for people with dementia and their carers, including a range of possible benefits. It’s a good idea to arrange a benefits check with a benefits adviser so they can let the person and those supporting them know what they are entitled to. Contact Citizens Advice to do this (see Young-onset dementia - more resources).

Driving

If a person has been driving and is diagnosed with dementia, they must inform Driver and Vehicle Licensing Agency (DVLA) if they are in England and Wales, or Driver & Vehicle Agency (DVA) if they are in Northern Ireland. They should also inform their insurance company.

DVLA or DVA will ask for a doctor’s report and may ask the person to take a driving assessment. The driving assessment can help with any final decision. It is important for the person to follow medical advice when it comes to driving, even if they are waiting on a decision from DVLA or DVA. Some people with dementia decide to give up driving voluntarily. For younger people with dementia this can be a very difficult change to adjust to. They are more likely than older people to have commitments that rely on them driving, such as children or work. This can have an impact on how a younger person with dementia feels about themselves and on their relationships with others. However, it can help a person to consider some of the benefits of not driving, such as saving money on insurance, tax and parking, and having more opportunities to walk.

Staying involved and active

Dementia can have a big impact on a younger person’s ability to do their daily activities and things they enjoy. This can impact their sense of identity and how they feel about themselves. It is important for people to maintain their independence and carry on doing things that matter to them. If the person has had to give up work or interests because of their diagnosis, finding new or different activities can help them to stay engaged and feeling useful.

Staying active and involved through different activities can be good for the health and wellbeing of people with young-onset dementia. This includes physical activities such as swimming or gardening, or taking opportunities to get involved in community events, research and campaigning. Some younger people with dementia find that their diagnosis means they can try new things they haven’t done before – for example, becoming an ambassador for other people with young-onset dementia.

Younger people with dementia may need support to continue doing activities. Some people stop doing things after their diagnosis, or find they lose opportunities for doing things if their friends are unsure how to act around them or stop inviting them.  However, it’s important to continue doing things they enjoy.

Over time the person may need more support or the activities may need to be adapted to support them. Some younger people with dementia find it helps to do activities with other people living with young-onset dementia. There is more information about this under Services for people with young-onset dementia.

There is a range of technology available that can help younger people with dementia with day-to-day activities. If the person is used to using a tablet or smartphone there are lots of apps that can help with remembering appointments, taking medication or even continuing hobbies. For more information a person with dementia may want to read Keeping active and involved and Using technology to help with everyday life.