If you have dementia, you are still you. You are still the same person as you have always been, and are likely to want to stay in your own house, with your husband or wife, with your pets and garden. One thing you are unlikely to want is to be uprooted and put into a care home.
In the words of a client’s daughter “Mum couldn’t go to a care home. Her dementia was too bad for a normal residential home, and if she went to a specialist dementia care home, she would have been locked in. She was still lucid enough to have known that she was being locked in, and being kept prisoner. It would have killed her.”
However, someone with dementia still needs to be cared for. A family carer can do only so much before he or she breaks, and this is where good care agencies help. Many people who are looking after someone with dementia will have help from a good agency once or twice a day, and for this we recommend Home Instead – we have worked with them for years, and find they are extremely good.
When dementia and caring for someone with dementia gets beyond the level at which hourly care can help, or the family carer needs a proper holiday, this is where live-in care comes in. Live-in care is the obvious alternative to a care home or a nursing home, especially for someone with dementia, for whom the disturbance and uprooting of moving to a care home can be miserable.
A live-in carer stays in her client’s house, and is trained to care for someone with dementia (we know the training is good, because the number of calls from carers for help and advice with dementia clients has fallen dramatically, since we made dementia training compulsory). The carer is there all day, to help his or her client to do the things she wants to do.
According to the Alzheimer’s society, 85 per cent of people would want to stay living at home for as long as possible if diagnosed with dementia.
Our clients want carers with empathy. Who will think of their client as a person, as someone with a history; with hopes and fears for the future; with rational and irrational feelings; with emotions and with likes and dislikes.
We know that empathy and a caring attitude are born, not created. We also know that empathy and a caring attitude can be promoted and can grow, if the environment is right, and if empathy is encouraged. This is why our training team spends so much time emphasising empathy, encouraging people to use their innate empathy when caring for their clients.
Throughout our training programme, the carers are asked to think about their client first. To think “how would I like it if it were me?” And to think about their client properly, to use their imagination and techniques we teach them, to really understand what the client wants.
Throughout the work we do, our focus is on making sure that our carers are doing what the client wants. That the carers are there to enable the client to live as he or she wants. This is why a large part of our assessment process focuses on our client’s personality, history, hobbies, likes, dislikes, hopes and fears.
One of the most important parts of dementia care is to work with the person being cared for, so that he or she stays as independent as possible. So that he or she carries on doing the things she wants and can do, and has help when she comes across something which she can’t do. This is why the dementia care our carers give is person-centred, rather than task-based.
Live-in dementia care works. How do we know? Because our carers are looking after people with dementia all the time. More than half of our clients has some form of dementia, so our teams are extremely experienced in this type of care.
With live in dementia care, it means that our client is at home, she stays somewhere she knows and loves, she is being cared for by someone she knows and likes, she still has her dog or cat, and has as little disruption and change as possible.
We know that with dementia care, good training for carers is essential.
Helen Drain, our lead dementia trainer (Alzheimer’s Society approved, and Dementia Friends champion) knows this from personal experience. When caring for her husband she, in her words:
“got everything wrong and made all the mistakes you can.
I don’t want to see anyone else going through that.”
We invest heavily in giving carers the specialist dementia care training they need.
Nobody can care for someone with dementia forever. Everybody needs a break. This is why our clients come to us for dementia respite care.
We know that our clients want continuity, and to have carers they know and like. However, we don’t allocate one carer to a client for the long term, there is too much risk of the carer getting burned out.
Therefore we introduce a small team of carers (with whom the client gets on well), each of whom generally stays with her client between two and six weeks at a time, before being replaced by another team member – before the carer has become exhausted. This way we can make sure that our client sees only people she knows, without running the risk of the carers getting tired out.
What does it cost? Depending on your wants and needs, and your management model, the total cost for dementia care at home is usually between £900 and £1,300 a week.
During Dementia Awareness week 2017, everybody in our head office attended Dementia Friends sessions.
These were run by Helen Drain and Colleen Louw, who are both accredited Dementia Champions and key parts of our carer training team.
The Dementia Friends project is run by the Alzheimer’s Society, and is:
“a programme to create a climate of kindness and understanding, so that everyone affected by dementia feels part of, not apart from, society.”
Read all about it here.
Mrs Ritchie has dementia. The exact type of dementia has never been diagnosed, but she started to need more and more care.
Her daughter, who lived 4 miles away, went from visiting once a day to several times a day, as well as receiving visits from her neighbours who were extremely kind and helpful.
But this wasn’t enough.
Her family started to explore the idea of her going into a residential home, but this would have made Mrs Ritchie miserable.
Her two main loves in life are her dog and her garden. Going into residential care would have meant that she’d have to give these up.
With carers from Christies Care, Mrs Ritchie is still at home. She looks after her garden and walks her dog on her favourite walks.
Her sons come and stay for weekends, bringing her grandchildren too.
Importantly, her family doesn’t need to worry any more.
“I no longer feel sick every time the phone rings. And I’ve been able to have a holiday, without having to worry about mum.”
Mrs Ritchie’s daughter
Jill Sinclair wrote a blog about herself and her father, who was diagnosed with Alzheimer’s in 2009.
The blog charts the crises, the tough decisions and the good times that she and her father have gone through: including trying to take a holiday, the importance of diet, the truth about sleep, how to cope with a hospital admission and having to deal with the NHS, having live-in carers and finally about his death.
You can read Jill’s blog at
“The benefits are immense. Dad always has someone with him. I have the help I need and, crucially, I am able to enjoy my time with Dad without getting too tired or irritable. We now have a much more sociable and companionable relationship. More father and daughter and less Nurse Ratched and patient.
It can be costly but it’s still cheaper than a Care or Nursing Home and if you have any assets – savings, a house – you’re going to end up paying for care.”