Caring as dementia progresses

Find out more about the challenges you might face as the person's dementia progresses, and read advice on how to cope.

Carers: looking after yourself
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Moving the person into a care home

If a person with dementia moves into a care home it can also have a big impact on the person’s carer. You may worry about the care the person will receive, how the move will affect them and whether they will settle in. You might worry about how your relationship with the person will be affected.
You might also worry about the impact on your own life, especially if you have been caring for the person for a long time.

Some carers worry that they have let the person down because they feel they should have been able to cope with caring for the person for longer. Some carers may also feel guilty that the person has moved into a care home at all, especially if they had promised the person this wouldn’t happen. These emotions can be very difficult to deal with. Remember that because dementia is a complex and progressive condition, a care home may become the best place to meet the person’s needs. Try not to be too hard on yourself. Decisions about when and whether a person should move into a care home are often affected by things you can’t control. Remember that you are doing what you think is best for the person you are caring for, based on the circumstances you are in.

If the person you are caring for moves into a care home you may begin to question your role and whether they still need you. Some carers find this difficult and they no longer think of themselves as being a carer. 
This can be similar to feeling that their role changed from being a ‘family member’ to being a ‘carer’ when they first began to support the person with dementia.

If you have any of these feelings it is important for you to address them and seek support. For example, speak to your family and friends, a support group, care home staff or a professional, such as a support worker or counsellor. See the section ‘Getting help and support’ for more information.

If the person you are caring for moves into a care home it is likely to change your relationship. However it doesn’t mean they no longer need you. You should still be able to help care for them if you want to. Speak to staff at the care home about how you can be involved with the person’s care and ways you can maintain your relationship. Some carers find their relationship with the person improves when they move into a care home. They can focus on their relationship and positive memories that they share, rather than on the day-to-day tasks and pressures of caring.

When your caring role ends

Dementia is a life-limiting illness. This means there will be a time when your caring role comes to an end. This can be a very difficult time. You will be grieving for the person who has died as well as coping with the end of your caring role. At this time it’s common for people to think about the care they provided and wonder whether they did enough or they should have done things differently.

You may have lost contact with friends or family members and find it hard to get back in touch with them. Or you may find it hard to adjust to not being a carer anymore because you have thought of yourself as being one for so long.

Some carers therefore find it helpful to think about the future ahead of time, including what may happen when they no longer have a caring role.
There are carers organisations that can give you information and support to help you adjust. For more information see the section 'Other resources for carers' and the pages on 'Grief, loss and bereavement'. Most importantly, take time to think about yourself and talk to someone about your feelings.

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