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How to reconnect as a family when living with dementia

dementia family wellbeing
dementia family wellbeing

Hilda Hayo

Chief Admiral Nurse and Chief Executive, Dementia UK

Feelings of hopelessness, confusion and loneliness are commonplace not just in a person diagnosed with dementia, but also for relatives, close friends and partners as the disease unfolds.

More and more people are being diagnosed with dementia which makes it one of the greatest health issues of our time.

How dementia affects relationships

A diagnosis of dementia can change the dynamics of a relationship. The person with dementia may become more dependent on their partner or children for example. This may be particularly challenging due to the way it changes the roles and relationships within the family. The family may also become less open about dementia and the effects it is having not just amongst themselves, but with friends too. These relationships can further become strained as the person with dementia may start to lose memories, have a change in personality or behaviour and ability to communicate. There is however support available to families to help them face the difficulties they may experience due to the effects of dementia.

Ways to improve family connection

Dementia is a progressive condition and the way it presents in people can be complex and unpredictable. Families need to understand that they are never alone in living with dementia and there is always someone they can turn to. This can come from family members or specialist dementia nurses (Admiral Nurses) and the Admiral Nurse Dementia Helpline. As in any relationship, communication is key:

The most important thing to do is to consider your own needs, as well as the person you are caring for.

In order to look after yourself, have a regular break and accept any support that is offered from children, relatives, or friends. You will feel more relaxed, which will help the person you are looking after to also feel relaxed

Be as open as you possibly can about dementia to family members and friends who visit. They may not realise what you are doing and think, as you appear to be coping so well, you don’t need support. For younger children in particular, it may be hard for them to understand what a diagnosis actually means. You can always say that their relative is having difficulties with conversation and their memory isn’t what it used to be. If you are having family get-togethers then try to include the person with dementia in as many decisions about activities and outings as possible 

Consider using pictures to illustrate what you’re saying. If you’re talking about the grandchildren, show them photographs of them at the same time. Try to be patient if you are waiting for a response

The person with dementia may be struggling to accept that they have lost their independence and may say, for example, that they need to go to work when they haven’t been going for a while. You can ask them to help out with household chores or gardening but do be patient if they don’t do these in quite the way that you would like them to. The important thing is that you’re giving them an opportunity to help out in the family home, helping to preserve their sense of belonging.

A positive future

By keeping in mind the importance of communication and reconnection, people with dementia and their families can have the confidence to face the future with less fear. Everyone living with dementia needs an outlet to express joy, fears and even to provide reassurance. No matter who it’s with, communication can help you to continue and grow relationships with the person who has been diagnosed and the wider family.

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