When it comes to supporting a person living with dementia in their own home – whether they live alone or with family – home care can definitely work well. I have seen it in action, and I am passionate about supporting people with dementia to remain living in their own homes for as long as possible, if this is what they choose.
But given that dementia is a progressive illness – people do get worse as the years go by – many people want to know how to recognise when being cared for at home is no longer suitable. There is no one simple answer to this question, but hopefully I can share some ideas for thinking through the issues.
It’s something I have a lot of experience in, because I’m the co-founder and CEO of Group Homes Australia (GHA) where we support people who are living with dementia in the community, whether it’s in their own homes or in one of our small GHA homes (we have 10 in Sydney). We are an approved home care package provider, and also offer home care on a privately funded basis.
Home care can work well for people living with dementia because, crucially, home is familiar to them. They know their way around, whether it be in the kitchen, to the toilet, or relaxing in the living room. And this familiarity is so important for a person with dementia because it means they don’t have to learn new skills or navigate a new environment – which can be particularly difficult if you are having problems with short-term memory.
It’s also important to remember that just because someone is living with dementia, it doesn’t mean that they lose all their skills. They might just need assistance with having a shower, or preparing meals, or shopping. Home care can fill in the gaps for the person living with dementia just with the areas where day-to-day living is becoming more difficult.
It is important to check that the home environment is safe and to do what can we do to make it safer. It might mean making some changes in the kitchen (for example, putting up some simple signs to show where things are), or installing safety switches or placing slip mats in bathrooms to minimise the risk of falling. We can’t eliminate risk in the house, but we can reduce it as much as possible.
We also need to make sure that there are consistent care workers coming into the home. One of the biggest struggles that people with dementia have is to build rapport and trust so they need to see the same face regularly and have continuity of care.
If you have a different care worker knocking on the door every week, it can be difficult for the person with dementia to learn trust with this person. We find that the person living with dementia may not necessarily remember the care worker –but they will remember their smile, they will remember the way they made them feel.
Care workers also need to be trained in dementia care. It can’t just be someone who’s a nice person and wants to help, because the important thing is that it’s not what they do, it’s how they do it. It’s the language that they use, it’s the way they prompt, the way they ask for permission.
It’s the way the care worker engages with the person with dementia that allows them to have the dignity of being in their own home without feeling like they are being patronised or smothered.
The reality is that dementia is a progressive, terminal disease. We know that, over tim, the needs of the person with dementia will increase.
The care worker who is coming in each week will gradually notice changes in how the person with dementia is managing, and it’s vital they keep a record of these observations and communicate with the family about them.
If there has been a deterioration in the person’s situation, it’s worth thinking through a few questions. What were the strategies that worked last month, and which of these are still working? If they are not, why? Is it because there have been changes with the care workers? Has there been a change in the person’s health?
The answer might be to increase the level of care or put new systems in place. But it may be that the home environment is no longer safe for the person. They may have difficulties finding their way to and from the home, for example, if they like to head out for walks in the neighbourhood.
Even so, just because someone is at risk does not mean that they have to move to a residential care environment. We hear people say things like, ‘you know what, I’m 95-years-old, I’ve lived my entire life in my house and if I fall and die in my house, so be it’.
Another sign of change may be that the person with dementia no longer recognises their current home as their home. For example, if they experience problems with time and orientation due to their dementia, they may think that their childhood home is their ‘real’ home. It can be distressing for everyone when a person with dementia who has been living in the family home for say 30 years suddenly says, ‘I want to go home’.
The challenge for family members is to identify the progression of the dementia and think through whether a move to a new environment is going to increase or decrease the person’s quality of life. What matters to that person? If that person adores gardening and they have a beautiful garden, then by taking them out of that garden you are going to take away the biggest thing that matters to them.
But if they no longer take any interest in that garden, perhaps they are starting to forget that gardening was something that they were ever interested in, and they’re isolated, then it may be an opportunity to look into moving to a new environment that has higher levels of support. If the person’s quality of life is being affected by ever-increasing stress among family members, this could be an important factor also.
I think ultimately that’s what it comes down to: is the person going to benefit more from moving rather than staying in their home? It’s a different answer for each person.