Staying connected to the people who matter to you after a dementia diagnosis
Your close relationships will change in different ways after your diagnosis but there are many ways to stay connected. There are also opportunities to get to know new people too.
- Telling people about your dementia diagnosis
- How can dementia affect you and your relationships?
- You are here: Staying connected to the people who matter to you after a dementia diagnosis
- Dementia and your relationships – useful organisations
How might my close relationships change after my diagnosis?
Your close relationships will change in different ways after your diagnosis, depending on who the person is and the kind of relationship you have with them.
It’s important to let people close to you know that you’re still the same person and tell them how you are feeling. There are also opportunities to get to know new people too.
As your dementia progresses, those close to you will give you more support. You can make it easier for them to do this in practical ways, for example by setting up a lasting power of attorney.
For more information on useful conversations to have and the ways other people can help see our information on planning ahead.
How might dementia affect my relationship with my partner?
All couples have good times and difficult times, although you might find you switch between the two more often as things become challenging in different ways now that you have dementia. This can be difficult for both of you to adjust to.
You might also find that your feelings or your partner’s feelings change. Some couples feel closer to one another when one person has dementia, because they are helping each other through the experience. Other couples find they feel less close than they used to. See ‘Sex and intimacy’ in 'How can dementia affect you and your relationships?'.
These changes can be difficult, so it’s important to tell your partner how you’re feeling. It may help to get further support. See ‘If relationship problems develop’ on this page.
Other ways dementia may affect your relationship
When one partner develops dementia, some couples find that people in their wider families or friend groups spend less time with them. This may be because they are uncomfortable talking about dementia or don’t want to say the ‘wrong’ thing. You could try helping them understand more about dementia, or you may feel more comfortable focusing on your friends and family members who are more supportive.
If you are in a relationship that your family members or friends have already struggled to accept – for example due to sexual orientation, religious or cultural reasons – it can be even more difficult for you if they then don’t want to talk about dementia. It may help to connect with other people with dementia who have had similar experiences, for example on our online community Talking Point.
If you are lesbian, gay, bisexual or transgender, you may find that dementia affects your relationships in other ways.
How might dementia affect my relationships with children and young people?
It’s important to tell any children and young people in your life that you have dementia. These might be your children or grandchildren, your siblings’ children or children of close friends.
When you talk to your own children, you might find it helpful to ask other adults who know you both to be part of any conversations.
If your child is at school, it’s often a good idea to let their school know too. It’s natural to want to protect children from difficult or upsetting situations, but it’s important to tell them about your diagnosis and answer their questions for a number of reasons:
- It’s likely that children will notice if you are showing signs of your dementia. It may help them to know that changes in your behaviour are because of your condition, and are not directed at them.
- It can help children to learn important skills in understanding how others are feeling and managing difficult situations.
- If you don’t tell children and they later find out about your dementia, they may be upset that they weren’t told earlier. They may feel they could have helped earlier.
Supporting children and young people with their feelings
Children may experience different feelings about your dementia, including sadness, fear, anger and relief. They may not know many other people in the same situation.
It may be especially difficult for an older child having a parent with dementia, as they may feel very few people can relate to them.
It is important that children are supported to manage their feelings. They may wish to talk to a professional, including someone at their school, college or university.
Talking to the children in your life about your dementia can also bring you closer in some ways and provide new opportunities to spend time together.
If any of your close friends and family members have children or care for young people, they may find it useful to read our information on supporting children and young people when a person has dementia.
Children and young people will respond to the news of your dementia in different ways. This will partly be affected by their age and how they tend to deal with things. You might find it easier to talk to them with another family member or friend.
It can be helpful to:
- explain what dementia is clearly and calmly at a level that the child or young person can understand. You may need to repeat your explanations on different occasions
- listen carefully to what they have to say and try to imagine the situation from their point of view
- acknowledge things that are happening that might seem strange – for example, you might forget things you’ve talked about with them – and explain that this is because of your dementia
- encourage them to ask any questions they have and to be honest about how they are feeling. Let them know that they can always talk to you
- look for signs that they may be anxious or worried, and try to reassure them. Sometimes children try to hide their feelings give them plenty of reassurance and hugs, where appropriate
- let them know you are still the same person and the way you feel about them hasn’t changed
- use humour, if it feels appropriate. It often helps if you can laugh together.
How might my relationships with other family members be affected?
You may have family members who struggle to accept that you have dementia, or who don’t know what to say, or how to act or feel. This can be difficult, especially when you might be adjusting to your dementia yourself and need support from them.
How can I cope with changes to my family relationships?
Try to let people come to terms with your dementia in their own way and time.
For some family members, learning more about dementia could help them to understand how they might be able to support you. This is also the case for friends (see below). There is information on all aspects of dementia on our website and we can provide print copies for free.
In the meantime, other family members and friends may be able to give you the support that you need.
What if some family relationships become difficult?
If your relationship with one or more family members has become difficult and is not getting better, help is also available from other support services. For example, you can call our Dementia Connect support line on 0333 150 3456 where our dementia advisers can give you practical and emotional advice. They can also connect you to local services and groups that can support you.
How might dementia affect my friendships?
Friendships are important throughout life, and continue to be important when you have dementia.
For some people, friends are the main or most important people who support them. Whether or not this is true for you, it can be helpful to have people to talk to outside your family. You may find it easier to talk to friends – especially if you have difficult relationships with any family members.
You may have special memories or interests in common with friends. You may socialise, play a sport with them or work together – or may have done so in the past. These friends can help you to keep connections with things that are important to you.
Friends may be willing to help in practical ways, like caring for you for short periods or even full-time. You may choose a close friend instead of, or as well as, a partner or family member, to become your attorney through a Lasting power of attorney (LPA).
At the same time, some friends may find it difficult to accept that you have dementia. Some may struggle with how to continue being part of your life. There may be some friends who no longer stay in touch, and this might be hard to come to terms with.
How can I deal with changes to my friendships?
Let your friends know that you are around and able to enjoy the things you did before you were diagnosed with dementia. You might have to adapt some of these activities, but friends can support you with this.
You may also have opportunities to make new friends. For instance, you might attend activities or local support groups where you can get to know other people who have dementia.
‘I was diagnosed last year with FTD [frontotemporal dementia] and I go to a group every other Wednesday… for anyone under the age of 70… I also go to a tea dance and Singing for the Brain.’
Person living with dementia
If relationship problems develop
Some people with dementia find that problems develop in one or more of their relationships. Talking to the other person can often help, but sometimes you might feel you need support from other people to deal with these problems.
You can get help from different services, such as support lines, support groups or counsellors.
Tips for staying in touch with the people who matter to you
It’s important to stay in touch with the people who matter to you. They can help you cope with your dementia, support you to keep doing the things you enjoy, and help you to feel valued.
The people around you can play a big part in helping you cope with your diagnosis. The following tips can help you to get the most out of your important relationships, and make new ones, so that you can live as well as possible with dementia.
Let people know that you want to keep your relationship with them.
Communicate with the people who are important to you when you’re ready – tell them you have dementia, how it is affecting you, and how they can help you.
This may also reassure people if they don’t know what to say or how to treat you following your diagnosis of dementia.
Keep in touch in different ways.
Many people enjoy meeting their friends and family face to face. If this isn’t possible there are lots of different ways to communicate. This could be over the phone, through video calls, or using messaging services on your mobile phone or tablet.
Be open to new friendships or relationships.
Getting to know new people in your life can be a great way to stay active and involved.
Try to get used to doing things in new ways.
You are likely to need to make changes to adjust to your dementia. Being open to these changes can help you to keep doing things you enjoy with the important people in your life. Together you can support each other to get used to new ways of doing things.
Only make the changes you need to, and don’t feel you must change every aspect of your life just because you have dementia. Some areas of your life and relationships may not change very much – or at all.
‘ The most important advice I can give you is to keep contact with whatever family and friends you have already and try to make new ones through whatever associations there are locally.’
Person living with dementia
Dementia Support Line
Dementia Support Forum
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