How can dementia affect you and your relationships?

How might dementia affect me and my relationships?

Dementia affects everyone differently. This can include difficulties with memory, thinking, problem-solving or language, and changes in mood, perception and behaviour.

All of these symptoms can affect your relationships in different ways. However, with the right support, it is possible to adjust to these changes.

Having dementia also means you will come to depend more on the people in your life over time. This might be difficult for you or them to accept. However, in time you may also find it brings you closer together.

How might things change when someone takes on a caring role?

Over time, a partner, close family member or friend may take on the role of caring for or supporting you. This can raise the following issues:

• If your partner takes on this role, it might be difficult to feel that you are still ‘equals’ in the relationship.
• One of your children may take on this role. This might be difficult for you both to accept at first because in the past you cared for them, and now it’s the other way round.
• If you are a younger person with dementia, your parent might care for you. This can be difficult for you both to accept, as you might have thought you would be caring for your parent as they grew older. You both might not have imagined that they would care for you again once you became an adult.

Caring can often be challenging, and this is likely to affect how the person caring for you is feeling. They may sometimes be sad, stressed, frustrated, fed up or just tired. However, caring can also be a positive experience – some people find it rewarding and satisfying.

Referring to someone as your 'carer'

When you are in contact with health and care professionals such as doctors or social workers, they might refer to the person who helps you as your ‘carer’. You might not think of the person in this way. Instead, you might think of them as you always have – for example, they are your wife, husband, partner, child or friend rather than your carer. They might feel the same way too.

However, it can be helpful to refer to this person as your carer when you are talking to health and social care professionals, or if you are looking for support. This is because it makes it clear to people that this person has an important role in supporting you.

Accepting care and support from others

Although one person may become your regular carer, other people you know may sometimes help you for short periods.

You may find depending on others difficult at first, especially if they mostly relied on you in the past. However, spending time with friends and family can be good for both of you. Try to accept any changes around care and support in your relationships with other people, and enjoy your time with them.

It can also help to explain to people how they can support you. Let them know the things that you can still do independently, and the things that you need more help with.

How can I cope with different changes to my relationships?

Having dementia means that you may change in ways that affect your relationships. This may feel difficult and upsetting at times. However, there are things you and the people around you can do to adapt to these changes and live as well as possible.

Communicating

Over time, dementia can make it more difficult for you to communicate. This can be very frustrating, as communication is so important in a relationship. When you’re trying to communicate with someone, the following tips can make it easier:

• Make eye contact.
• Listen carefully and give each other your full attention.
• Get rid of things that make communicating more difficult – for example, turn off the TV and radio if noise from these is causing problems, and make sure the room is bright so that you can see each other clearly.
• Give yourself enough time for a conversation so you don’t feel you have to rush.
• Prompts can be helpful – for example, pointing at a photo or object if you have trouble finding the right word.

Any of the changes in this section can mean you have to talk about things that you might find difficult to discuss with other people, such as money, sex or how you are feeling. However, these conversations will mean that trusted friends, family members or professionals such as counsellors can support you with practical activities and your emotional wellbeing.

The people in your life may also find it helpful to read our information on communicating.

‘I have found noisy social gatherings and having to keep up with conversations quite stressful. So one thing I won’t be doing is large gatherings, whilst letting friends and family know how I struggle with this.’

Person living with dementia

Coping with memory loss

Memory loss is a common symptom of dementia. If you are affected by this, you may start to forget the names of people you know.

This can be uncomfortable and frustrating for them and for you. However, people close to you are still going to enjoy spending time with you even if you sometimes forget their names.

Let people know how they can support you with this. For example, it might help if they don’t remind you that you repeat things or have forgotten them. They can also introduce themselves or other people (for example, ‘here’s our
neighbour, Bill’). 

For more tips on coping with memory loss see our booklet, The memory handbook.

Managing feelings and behaviour changes

You might notice changes in the way you feel, and those around you might notice changes in your behaviour. For example, some people with dementia become more withdrawn or less patient than they used to be. This may be difficult for other people to understand and accept as they may think you feel differently about them. Try to let them know that these changes are because of the dementia and not because your feelings towards them have changed.

You and the people who care for you may also feel low, stressed or anxious at times. These feelings can affect your relationship. If you or those caring for you find that these feelings are causing problems, talk to your GP. There are also organisations who can help. 

Daily living

Everyday activities such as cooking, making appointments or doing family finances become more difficult as dementia progresses.

You may be used to doing these things by yourself, but now you take longer or need someone to help you. You may be able to make adaptations to make tasks easier, or let someone else take on parts you find difficult. Both you and the person helping you might find this difficult at first, so take the time you both need to adjust.

For more tips see our Keeping active and involved information.

Sex and intimacy

As your brain changes over time, you may find your interest in sex changes. You may have much more interest in sex or feel less like being intimate.

If you are in a physical relationship with a partner, you may notice changes in their interest in sex too. If your partner is the main person caring for you, they may be more tired and less interested in sex.

If you and your partner don’t feel the same way, there are other ways you can try to stay close and connected – for example, cuddling or other physical contact, watching a favourite film together, or doing other activities that you both like and enjoy doing with each other. This will be different for every couple and you might need to try a few different things to find what works for you both.

For more information about relationships with partners, see our page 'Staying connected to the people who matter to you'. Your partner may also find it useful to read our information about sex, intimacy and dementia.

Changing plans

You don’t need to cancel any plans you have, such as going on holiday or moving home, just because you have dementia.

However, there may be a good reason why you need to change plans or put them on hold. For example, you might have to make changes to a holiday or theatre trip because you have difficulties with your memory or concentration.

This might make you feel disappointed or frustrated. Try to be honest about how that makes you feel. Talk to the people you’d made the plans with, or to another person you trust. Try to adapt to what is now possible and don’t focus on what you can no longer do.

‘ A big thing is to accept that normal is new and different, almost every day. That there are things that you can’t do anymore, or at least in the same way you used to. Another big thing is accepting that you might need help and letting people help you.’

Person living with dementia

How will dementia affect my relationships that were difficult before my diagnosis?

Not all our connections with people are easy. You may have relationships that were difficult before you had dementia. For example, you or the other person might have had problems with alcohol or other drugs, or with mental illness. There may have been difficult family issues to deal with, and your relationship may even have been abusive at times.

Any problems are not likely to go away just because you have dementia. You might still have difficult or painful feelings, or you may not want to accept help from certain people.

If a relationship was difficult before dementia, this can also make it hard for some people to want to take on a caring role. They may carry negative feelings from the past that can affect how they feel about you now. For example, when you have difficulties because of your dementia, they may be less understanding.

What support is available if I have difficult relationships?

If you have a difficult relationship with a person who is still in your life, try to get help to develop a healthy and safe relationship with them now that you have dementia.

You could look for support from a counsellor, or ask other family members or friends to be part of any conversations you have with the person.

If you don’t feel safe – for example if your relationship has been abusive – it is important to tell someone you trust as soon as possible. This could be your GP,another health or social care professional, or an organisation such as Relate.

For contact details of more organisations, go to the Dementia and your relationships - useful organisations page.