Dementia can be a heartbreaking disease. There is much that troubles and worries us about it. It can seem that one day we are happily living our lives when we get this nagging feeling that something is ‘not quite right’ – with our own ability to manage our day to day lives or that of someone close to us. We worry that if dementia has become part of our lives, it will lead inevitably to a slide toward total dependence, including the need to move to a long-term care (LTC) home.
I imagine you might be starting to feel uncomfortable and wanting to walk away from these thoughts. After all, it’s human nature to try to avoid anything painful or unpleasant and let’s face it – very few people probably look forward to a time when they will need to move into a LTC home. But for 747,000 Canadians, dementia is a part of their lives. They live with it every day. And as more and more help is required to support the person living with dementia, the need for LTC becomes a reality for most individuals and families. In fact, 57% of seniors living in a residential care home have a diagnosis of dementia, and 70% of all individuals diagnosed with dementia will die in a LTC home.
One of the problems, though, is that every time a LTC home is featured in the news it seems to be bad news. We never seem to have anything positive to say. Our friends and families who have had a relative move into a LTC home just seem resigned that there is nothing to be done – this is the way it needs to be. Institutional living, lack of privacy, bad food, regimented routines, lack of independence and choice. The list of negatives goes on and on.
Well, the Alzheimer Society of Canada (ASC) and lots of others believe that people with dementia and their families deserve much better than this. And in fact, although it rarely makes the news headlines, there are many, many LTC homes who are doing some great work to truly make a LTC home a home for the residents who live there. Does this mean that people want to hurry up and move into a LTC home? Of course not. Many people want to live in their own homes for as long as possible. But as long as we have dementia, the majority of people with dementia is going to need the support that a communal living environment can provide. So our job is to make the experience of living in LTC as life-affirming and meaningful as possible.
At ASC, we know that the decision to move into LTC is one of the most difficult and often painful decisions any person or family will make. It’s true that by the time this help is needed, families can be quite relieved to get the help and support of a LTC home but it still is usually an emotionally charged time. Families may feel some relief but it is usually coupled with sadness, grief, exhaustion, guilt and worry. How will I fit into this new place? How can I still care for my family member? How do I work with the staff? We know that people newly diagnosed with dementia often don’t even want to think about the day when they might need LTC, associating it with a lack of control over their own lives.
In 2008, ASC decided to start a different conversation about LTC. Instead of just talking about all the negatives, and how many beds are needed and who will pay for them, ASC decided to start talking about the experience of living in LTC. How could we make the need for LTC a little less frightening for people? How could we better prepare families? How could we support staff in providing the type of care they want to provide, centred on the needs of the resident instead of the needs of the home? What do we already know about good care that we could build on?
ASC created a summary of what we know good, person-centred care looks like. After all, person-centred care means exactly what it sounds like – that care is, to the greatest extent possible, centred on and driven by the person with dementia – their values, preferences, likes, dislikes – and those of their family and substitute decision makers. This helped us to be clear on what we know theoretically about good care but it didn’t help us to understand how to make this kind of person-centred care happen – in real life and in real LTC homes.
So we invited a number of experts to come together to help us better understand this. We knew that there is lots of quality, person-centred care going on in LTC homes right across this country and we needed to learn how this is possible. After all, if some LTC homes can do this, why can’t everyone? People working in, living in and studying LTC helped us to choose six LTC homes in diverse communities across Canada who are truly trying to take a person-centred approach to supporting residents and their families. The good news is that these six homes are just a sample of many homes in Canada who are implementing a person-centred approach to care and these six were kind enough to let us come and learn how they are creating a change in culture from a ‘medical, task oriented model’ to a ‘person-centred care model’.
We learned a lot from these homes. They are not perfect; they are on a continuous journey of learning how to keep getting better and better at the care they provide – but they have put some interesting and creative processes into practice. For example, they recognize that family members are not just ‘visitors’ but key members of the care team who have vital information about the resident to help guide the kind of care that they provide. Families can help staff understand why their Dad might be fighting them when they try to take him to the shower. Perhaps he is being showered in the morning and he has never been a ‘morning person’. This important information might change his care routine to include a shower in the afternoon or early evening, when he is more awake and chatty. Why is this important? Well, this simple example shows that this gentleman will likely be more comfortable, happier and perhaps calmer if he feels less rushed and has a chance to understand what is happening when the staff approach him for a shower. The staff almost certainly will have an easier time of it if this gentleman does not try to push them away. And families can rest easier knowing that their father or husband is likely more content while he gets the physical care he needs.
ASC is now sharing the 7 common key elements to providing person-centred care that we uncovered in talking to these homes. We call them PC P.E.A.R.L.S.™ and you can learn more about each element at www.alzheimer.ca/culturechange:
So is this the magic bullet? Is this all it takes to turn around LTC in Canada from one that is institutional to home like? From a setting that is task oriented to one that is person oriented? Of course it is not that simple. ASC is committed to continuing to work with people who live and work in LTC to keep learning and sharing what works – and what doesn’t – so we can continue to create ripples of positive change right across the LTC home sector.
ASC cannot do all this alone. We are very grateful for all the time that experts in LTC – including the residents who live there and the families who are part of the care- have given us to help us begin to understand the complex world of LTC in Canada. But we are very encouraged. Staff of LTC homes in Canada generally want to be person-centred; they want to feel proud of the experience their residents and families have in their homes. But they need tools to help make this possible. People with dementia and families have a vital role to play as they learn more about person-centred care, asking how they can work together with staff to make this approach the culture of care in the LTC homes they visit or live in. Together we can make a person-centred approach to care the norm in LTC homes in Canada, rather than the exception. There is reason for hope.