A positive choice: choosing long-stay care for a person with dementia - making the decision

If you care for a person with dementia, there may come a point when you have to think about long-stay care. Perhaps it will be because of a crisis. Or perhaps you are starting to plan ahead. Either way, it can be a difficult and painful decision.

However, choosing long stay care is not normally a decision you will have to make alone. The social work department will help, by providing a community care assessment. They will look at the needs of the person with dementia and his or her carer. They will help you, and the person with dementia where possible, to consider whether long stay care is the right choice or whether other arrangements for extra support could help the person stay at home for longer.

Long-stay care is care somewhere other than at home. This booklet is mainly about choosing a care home. Sometimes people with dementia with complex needs will go into long term NHS care, but this is not very common these days.

Reasons for considering long-stay care

There are many possible reasons for considering long-stay care. The person you care for may want to go into long-stay care, perhaps because he or she is not coping, or for the company. Perhaps the person’s condition has recently worsened and long-stay care now seems best. Maybe you feel that you are no longer able to improve the quality of the person's life. Perhaps he or she now needs more care than you can manage. Or perhaps the person has been in hospital, and when he or she is discharged you are now unable to take him or her back.

Ideally, you should think about the move to long stay care well in advance. That way, you have plenty of time to discuss it with the person with dementia and the rest of the family, and to choose the right home – and if a crisis does happen, you will already have thought through the options. But don’t be hard on yourself if that’s not the way it happens. Sometimes a move has to happen quickly, for example because of a change in the person’s health – or the carer’s health. And many people find it too difficult emotionally to think about long stay care, until they have to. Many people have found that it can take weeks, months or even years to face up to and make the decision.

We’d never discussed it – we thought, it happens to other people, not to us.
- Wife

A difficult decision

I know I wasn’t caring for her out of love any more – it was more because I felt it was my duty.
- Husband

Very often, carers and families find deciding on long-stay care one of the hardest decisions they have to make. They may feel guilty at no longer being able to go on providing care. Sometimes people feel that they are failing in their duty, or breaking a promise not to let the person go into a care home. Carers may feel grief and frustration at not managing to go on caring for as long as they wish they could. But for most people with dementia, there comes a time when they need more care than can be managed at home, even with support services.

I couldn’t take any more, I was just exhausted myself.
- Wife

You, and your family if you have one, are important too. You must take into account your own health, both physical and mental. You can be a better support to someone if you have not yourself ‘gone under’ with the strain.

• Would you want someone else to go on caring for you even if it was seriously affecting their life?
• Would the person you care for have wanted you to keep caring past the point where you can manage?

We knew in our hearts that she’d never have wanted us to sacrifice our own lives and careers for her.
- Daughter

If you are worn down by trying to manage day-to-day caring, perhaps letting someone else take on the practical caring could mean that the time you spend with the person is more enjoyable for both of you.

In some cases the person with dementia actively wants to enter a care home, perhaps for the company or because he or she doesn’t want to be a burden on those they love. For some people this can make the decision easier, but it can be painful for others.

I was really hurt when she decided to go into a home, after all the years looking after her.
- Daughter-in-law

Involving the person with dementia

If you can, talk to the person with dementia about the options. Try to involve him or her in the decision as much as is practical. It is important that any decision is either a joint one, where that is possible, or made with full consideration of the person’s feelings. The person may already have told you his or her wishes. Take them into account if you can. But remember, the situation may have changed. Sometimes a promise not to let someone go into a home might have to be reconsidered, or broken, in the best interests of everyone involved.

Advocacy can help to make sure that the views and wishes of the person with dementia are heard and respected, and represented to others where the person is unable to do this by him or herself. Advocacy aims to promote maximum involvement in decision making. Sometimes a friend or family member may advocate for the person, or call the Dementia Helpline on 0808 808 3000 to find out about independent advocacy services in your area.

What if the person does not want to move?

I told him I just could not cope any longer, and the home could look after him 24 hours a day
- Carer

I told her, I’m frightened..anything could happen to you if I’m not here.
- Carer

People with dementia may lack insight into their situation. Sometimes someone with dementia will not understand why he or she should move into a home. Try talking to the person about why you think he or she would be better to move. Focus on the positive aspects. Try taking him or her to visit the home you have in mind, or suggest a trial stay.

There may be other options. Perhaps he or she could stay at home for a little longer, with extra support? Ask the social work department if there is any more support available to help with keeping the person at home.

However, it may simply not be possible for the person to stay at home, perhaps for his or her safety or health, or perhaps for the safety or health of the carer or others. If the person will not agree to move, someone else may have to make the decision on his or her behalf. This might be someone with a welfare power of attorney for the person – that is, someone that he or she appointed, when still well, to take such decisions. Or it may be necessary to ask the court to appoint someone to make the decision for him or her. This could be an ‘intervener’, who would be able to take just this one-off decision, or a ‘guardian’, who would stay involved long-term, and might have powers to take welfare and financial decisions.

See Money and legal issues for more information.

Getting help with your decision

Don't feel that you have to make this decision by yourself. It is important to talk through your feelings about your decision with other people.

Try to involve the rest of the family in the decision too. But if you disagree, don't let them pressure you into doing something you feel uncomfortable about.

Other people who can help are:

• family doctor (GP) or consultant
• community psychiatric nurse or mental health nurse
• social worker or care manager
• staff at any day centre or hospital that the person you care for attends
• priest, minister, rabbi, imam or other religious leader
• your local Alzheimer Scotland service, carers’ centre or advocacy service
• other carers who have had to make a similar decision.

You can also ring the Dementia Helpline free on 0808 808 3000 at any time, day or night. They can give you information and support, send you a list of homes, put you in touch with local services or a carers' support group or just help you to think things through.

It is quite natural to feel guilty about the decision. These feelings are nothing unusual. But remember, it is not a selfish decision. It may help to remind yourself that you are taking the best interests of the person you care for into account at every step along the way.

There are four of us, and we all visited homes and made joint decisions. My sister said, ‘We have to share the guilt.
- Daughter

Of course, the success will also be shared. You will probably also worry about how the person you care for will react. It will naturally be difficult for him or her at first. But experience shows that often the person with dementia adapts to the situation faster than the carer. You may well find that your relationship with the person improves in the long run. We will look at ways for making this adaptation easier for both of you later in the booklet.