Planning respite care for a relative or friend who has dementia

Talking Point members’ advice for someone worried about arranging replacement (respite) care for a person with dementia. 

We asked members of Talking Point for their advice to someone worried about arranging replacement (respite) care for a person with dementia.

Talking Point is a helpful community that’s free and open 24/7, where anyone who’s affected by dementia can get valuable support online.

Rehana says,

‘My first tip is to take the time to read up about the care homes you are considering and visit each one. Ask to be shown around – I asked if I could just sit in the lounge where the residents were, to get an idea of what it is like.

‘I described my mother’s routine and general needs and behaviours, and asked the manager how her needs would be met.

‘I asked what activities would be available and how they actively encourage participation.

‘I asked to see the menus available and how flexible they are to meeting my mother’s cultural and dietary needs.

‘During my visit, I spoke to some of the carers.

‘Visiting her regularly reassured her that I wasn’t abandoning her, and also helped keep an eye on how she was.’

MaNaAk says,

‘If it’s with a care home, make unannounced visits, describe your loved one on a bad day and let the home know about any special diet. Ask about activities and notice how staff and residents interact.

‘If you’ve chosen a home, arrange your loved one’s room in the way that you think they would like it.

‘Try to get them in for a few visits first, use “love lies” when you need to, be very discreet – do not say goodbye and the home will distract your loved one.’

Fusilier274 says,

‘When I first left her, I snuck off. I rang the day after to check she was fine.

‘I was going to see her and was told you can but try not to, as it’s respite for you not her, so I stayed away.

‘I visit when I can – she’s safe, she’s well and she’s being looked after.’

Jessbow says,

‘Book the respite before you book your own holiday or event. I found it almost impossible to find respite that was bookable.’ 

Helly68 says,

‘Consider day respite too. We paid for Mummy to go to a care home during the day a few days a week to give my dad a break.

‘We had to pay for this, as the council won’t fund and there was no suitable day care option locally.

‘Daddy got a break and Mummy was able to get to know the staff at the care home she eventually became a full-time resident at.

‘Not all homes are familiar with this, but they will usually do it, as it is money for them and they don’t necessarily need a room if the person with dementia attends during the day only.’

Feri says,

‘What I find useful is to take any breaks from my wife as respite. When she sleeps for few hours, I sit down and relax. 

‘Right now, she has been in her room for two hours and it’s a respite for me. Whenever one of our children comes for an afternoon, I go out and enjoy myself. 

‘Don’t wait for a long break, it doesn’t come easily.’ 

What advice would you give someone who’s beginning to understand and accept that a relative or friend who has dementia now needs end of life care?

Email us by 5 September 2022 so we can share it in our next magazine.

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I was thinking of support at home not in a care home. What kind of help is available?

Hi Rosemary, thank you for your question. 

What kind of respite or replacement care is available will depend on where you are located. This is because the systems are different across England, Wales and Northern Ireland. We have information pages that cover all three of those countries, which you can find in our help and support section, here:

You may also find it useful to know what other types of support and services are available in your local area and more generally, here:

Please know that you can also call our support line to speak to a trained dementia advisor. They can learn more about your situation and may be able to provide relevant advice and support. To do this, just call 0333 150 3456. You can find more details and information about opening hours here:

We hope this helps.

Alzheimer's Society blog team