Research Profiles – A New Normal: Caring for People with Dementia

Canada, like many other countries across the globe, is facing a substantial rise in the number of people with Alzheimer’s disease and other forms of dementia. With no effective treatments at our disposal, we must prepare to provide care for this growing patient population. It’s time to address some very difficult questions: Who will be the caregivers – friends, family, paid professionals? How can we provide better support for these caregivers? How can we improve the overall quality of life for dementia patients and the people who care for them?

We recently hosted a panel discussion on dementia and caregiving to explore these and other questions. Our panelists included experts from across Canada:

Dr. Francine Ducharme is a Professor at the Faculty of Nursing, Université de Montréal, a researcher at the Centre de recherche de l’Institut universitaire de gériatrie de Montréal, and the Desjardins Research Chair in Nursing Care of the Elderly and their family. Her research focuses on the development and assessment of psychoeducational interventions for family caregivers of the elderly.

Ms. Julie Foley is the main caregiver to her partner Lowell, who has dementia. She is also the Lead for the Integrated Care Client Project at the Ontario Association of the Community Care Access Centres.

Dr. Janice Keefe is a Professor in the Department of Family Studies and Gerontology at Mount Saint Vincent University in Halifax, Nova Scotia, and she was recently appointed Director of the Nova Scotia Centre on Aging and the Lena Jodrey Chair in Gerontology. Her research areas include informal caregiving, specifically work and elder care, financial compensation and assessment, human resource issues, rural aging and continuing care policies. Video: Janice Keefe at Big Thinking

Moderator: As the number of dementia patients and caregivers climbs, what do we need to do to improve access to and uptake of caregiving resources?

Dr. Francine Ducharme (FD): I think we need to have new ways to support caregivers as clients of the health care system. Right now, access is limited to the people we care for and I think we need to develop new ways to support caregivers. More specifically, we need integrated care for caregivers – a family-centered approach to services. Caregivers have their own needs and integrated care for them is a necessity, starting from assessment of their needs to intervention during the post-caregiving period, taking into account the trajectory of the caregivers. They have different needs at different moments. And also – maybe Janice will talk more about this – policies for caregivers.

Dr. Janice Keefe (JK): I totally agree with Francine. Caregivers need to be considered as part of the system and not just accessing services through the person who receives the care.

And we need to do a better job of having just a general awareness of the role that caregivers play, and that they have legitimate needs that may be distinct and separate from the needs of the person who is receiving the care.

And coupled with that awareness, we need what I would consider a whole range of policies and supports, because there’s a lot of diversity among the caregiving population. So we really do need kind of a menu of support. For some people, it may be financial support, which I tend to focus on. For others, it may be direct services. But there definitely needs to be a much greater awareness but also availability of services and supports that are affordable for caregivers to access.

Moderator: So, if I’m hearing this correctly, what you’re both saying is that the caregiver needs to be part of the equation when you’re considering home care?

FD: That’s right.

JK: Absolutely. And right now when you go to access services, the assumption is that you’re going to be able to keep doing everything that you’ve done, and the reality is the reason why they’re reaching out to get support is that they can no longer keep doing what they’ve been doing.

FD: I think caregivers are now considered more as resources for the system to help their cared-for person, but they are also clients themselves as they have their own needs.

JK: I would put it even further and [say] that they should be partners helping to co-create some of the solutions to some of the issues they’re facing.

Ms. Julie Foley (JF): I’ve been involved in national organizations and my experience with home care is that it varies substantially across the country.

I can speak from a personal perspective, but also from a professional position in Ontario, and because I’m from the business sometimes I know where to look more easily. I am a social worker; I’ve been CEO of a large home care organization. So my familiarity with the system helped a lot.

But certainly the help that I get from home care is very much focused on what I need. There’s been attention from the beginning in terms of what I needed to keep on going. So I’ve been regarded both as a resource but also as part of the client family, so to speak. So I’ve been fortunate that way. I’ve been blessed to have a number of people say to me, “Julie, you need to get as much help as you can so that you can continue being the wife.”

Moderator: Is caregiving just a person-to-person process, or are there technologies or physical environments that can supplement or assist caregivers?

JF: Certainly, some of the community programming, and the physical environment that my husband goes into, have been instrumental in keeping him going. He goes to an adult day program where the physical environment is very welcoming; it’s homey; it’s not institutional in any kind of way.

I’m of an age where I didn’t grow up with technology, so to speak. Even though I use a computer and whatnot, I’m never one of the earliest adopters. So I’m not sure about the technology part. I think 20 years from now it will be a little bit different in terms of more people who are elderly who have used computers for a long time and have a certain frame of reference. Although it will still become difficult for the client with dementia to use new technology, so it may be more for the caregiver.

JK: A relative of mine has cognitive impairment and she lives by herself in the community and in her own home, and there are some technologies that enable her to live safer. For example, there’s Lifeline – they’ve advanced significantly so you don’t necessarily have to press the button – it can detect a sudden fall, for example. Or we have what has been a godsend for her family, a stove monitor which automatically turns off the stove if there’s no movement in front of it.

I’ve seen other assisted devices. Timed medication dispensers, particularly for people who have memory problems, are really, really helpful. And then there’s the monitoring of getting up and out of bed and that kind of thing, lights that come on, motion detectors that are helpful.

While not everyone can afford all of those gadgets, I do think that there have been some advances in those assisted devices that really do help people be more independent or be as independent as they can in their own home.

FD: And also, more than that, I think technologies can help caregivers themselves. Our team has developed a training program on the Web for caregivers, to help them learn how to find services, or learn how to communicate with patients. And for some caregivers, not for all, but for some caregivers, it’s very helpful, especially when they can’t go outside or when they are isolated.

We have evaluated this psychosocial program and we found that it was very, very helpful, particularly for men aged 45 to 64 years, and for certain women who were working. So it’s not just technology to help the cared-for person, but technology to help caregivers learn something about their role. I think it’s a new approach for caregivers, which is not for everybody for sure, but I think it will be used more and more in the near future.

Moderator: Do you have thoughts on where we should be focusing dementia research efforts to improve care?

JF: I’d like to see things start to happen earlier. I mean, I think about the messaging. When I say to someone that I haven’t seen for a while or a colleague that my husband has Alzheimer’s, the immediate reaction is, “Oh, isn’t that awful”, and you know, it isn’t pleasant but it’s not awful or it’s certainly not awful all the way through. The more we could take a look at messaging and using tools that are out there that are familiar, in consumer magazines, in retirement planning, where we might start to say there are all kinds of changes that will likely start to happen as we age. And as [people grow] a little bit more normalized about being prepared for changes, understanding that it isn’t awful right away, there are lots of adjustments [they can make]. And if you have some exposure to the idea, it won’t be quite so awful; it won’t perhaps take you quite so much by surprise.

JK: There are lots of challenges that are connected to it, but there’s also so much research that we know about how to deflect, for example, challenging behaviours, and some of the work that we’ve done at the Centre on Aging is trying to help the front line workers to understand what some of those deflections can be.

So that’s really important. But I also agree with Francine. [Caregiving] is not for everyone, so training for professionals and paid staff on issues related to caregiving is also important. We have translated our training for professionals into wed-based modules as well, in terms of trying to train those folks who are actually assessing the needs of the care situation. So that they are aware of the way that they’re viewing the caregiver, and how maybe they could see them as not just a resource, but more of a client or a partner. We also plan to add online training to use a caregiver assessment tool that we developed called the C.A.R.E. tool, which stands for Caregivers Aspirations Realities and Expectations.

FD: I agree. We need to do a lot of evaluative studies of new approaches, including staff training. I think the paid caregivers need to have better knowledge. Sometimes family caregivers know more than paid caregivers in long-term care institutions. It is terrible when you see the staff not knowing how to intervene with the specific symptoms associated with dementia. We need to improve the knowledge of professional caregivers and to evaluate different kinds of [training] approaches.

JK: I am surprised how many times – and whether it’s in home care or in long-term care – that folks don’t understand; they just expect all these sweet elderly people to be compliant and when they’re not they’re totally immobilized or ticked off because it’s getting in the way of getting to their next piece of work.

JF: With all due respect, I think part of it is also how those organizations are structured. There isn’t always enough time and enough staffing to do what needs to be done properly, because it takes more time to respond properly and to leave a little bit of space.

JK: And develop rapport in a relationship, particularly in a home care program where you’ve been allocated 15 minutes to get someone in and out of the bathtub. I wouldn’t want to leave the conversation suggesting the problem is with the individual people who are working. A lot of the problem – you’re absolutely right – is also the system.

Moderator: So what might care look like for a person with dementia 10 years from now, or 20 years from now?

JF: One of the things that I would love to see, and I think it would make a difference for many folks, is if there were community centres where there were a variety of programs offered. I mean, one of the things that personally I would love to use is respite care in long-term care homes [in Ontario], but I can’t bring myself to do that because my husband would just be totally lost. It would be wonderful if he had a day program he was going to, and he could get acclimatized, and it would be a place where there was more than one thing that happened, and I might be prepared then to leave him for a couple of days.

FD: Continuity of care is very, very important, especially for a person with dementia. The [patient] needs the same caring person and a trust relationship with the person. So continuity of care is very important. Presently, we change staff; we change services. It’s not an integrated care system. We need a case manager or – it doesn’t matter how you name it – someone who is taking care of the family. I hope we will see that everywhere in Canada in less than 10 years.

Opportunities for the caregivers are also important, opportunities to work and to go to school, as in the U.K. where they have the Opportunity Act. Caregivers are allowed to work and go to school and there’s support for that.

And maybe Janice will elaborate on that – policies to help caregivers to get their own life. Because if caregivers are happy, I think dementia care would be better.

JK: We do need to have an integrated system within health and community care, but we also need to have better employment policies, and we need to have better income security policies. We need those caregivers who have left the labour force to have some support. I mean, are we making sure that they are not jeopardizing their own health in order to provide the care?

We have some countries that are looking after workman’s compensation for those folks, so that if they do happen to hurt their backs they’re still able to receive some support for the work that they have been doing as a caregiver. When we talk about policies for caregivers, there’re so many different domains that we could put those under, and that’s where I think we need something similar to what Manitoba has recently brought in, this idea of a “caregiver lens.” When we’re developing policies, are we really considering the important role that family and friend caregivers are playing in this whole home arena?

JF: And certainly the tax policies as well.

JK: Oh, absolutely. You know, myself and others have called this the “inverse care law”, because the people who least need it are the ones who have the accountants to get it.

Moderator: There are lots of resources in self-help books and courses for parenting, for example, but what kind of resources are in place for this kind of unplanned caregiving?

JF: Certainly in Ontario, and I think across the country, the Alzheimer Society tries to provide some caregiving support and has quite a well-developed understanding about the impact on caregivers, but they’re pretty limited. I would have loved to have gone to some of the caregiving support groups, but they were all in the afternoon and I have a full-time job; I can’t do that. The caregiving resources or the resources to support caregivers need to be flexible.

And I think someone said earlier that there’s no one solution that works for everyone, so [we need a] menu of opportunities, both in terms of scheduling but also inclination. I think self-help resources are fabulous, and I’ve been very involved in developing them and promoting them in the past, but they need to be augmented in some sort of way by direct contact as well.

FD: And many programs are offered for caregivers when they’re really exhausted. Most people will have to, one day or another, be a caregiver for a parent. So why do we wait to support caregivers until they are exhausted? I think we need a preventative approach or a proactive approach to offer caregivers help and support early in their trajectory.

JF: Francine, I think that’s absolutely critical. And it goes back to my earlier comment about using retirement planning resources and consumer magazines and things like that to say to people, you know, odds are you’re going to be a caregiver somewhere along the line, if not for your parents, for your partner. So how can we help people to see early signs and understand that if you get things early you can make adjustments; that yes, [caregiving] changes your life, you can’t do exactly what you did before, but caregiving does not have to totally compromise your life right away.

Moderator: What is the single most common concern voiced about caregiving?

JF: Exhaustion!

JK: I think what’s surprising to us in terms of the work that we’re doing – we have a caregiver assessment tool that we developed and we use in research and it has recently been used in practice in Alberta – [is that] caregivers don’t get to tell their story that often. We just interviewed or we worked with 100 spousal caregivers and two thirds of them said it was the first time that they ever talked about their role as a caregiver in caring for someone with dementia. I still find that quite amazing.

FD: I think they need to be listened to and considered, and not be invisible. And when you talk with them and listen to them, their needs come out easily and I think the single most important concern for them is to be heard.

JF: And I think the other thing that’s critical, and I see this in my work as well, when you engage a caregiver in planning care that goes a long way – yes, there may be a limited menu of assistance available but at least the caregiver is part of sorting that out and identifying which pieces in which measure would be the most valuable to him or her.

Moderator: So, Julie, earlier you talked about the need to normalize dementia and caregiving. You said the caregiving experience isn’t awful all the time. Can you elaborate on that?

JF: There’s a great deal of satisfaction in being able to provide tender loving care for someone and knowing that what you do is making a difference in keeping him or her at home, even a week more than might be the case otherwise.

I think if people get help early enough and are able to make small adjustments that do not totally compromise their life, that’s another source of satisfaction. If you haven’t been exposed [to dementia] very much, there really is a sense of, “Oh my God, this will be awful”, and yes, it may be, but it doesn’t have to be that way right away or all of the time.

When my husband was first diagnosed, he had the kind of reaction you would expect in terms of being depressed. But because he was aware of that, and because I work in the business, he said, “How long do you think I have to live?” and I said, “I suspect you’ll be with me for another 10 years.” And that was really reassuring for him. Although, I had to really work with myself to prevent myself from thinking, “How will I ever last for 10 years?”

I knew enough to know it wasn’t going to be awful for a while. But if you don’t know that and you get that diagnosis, very quickly it’s pretty discouraging for caregivers.

FD: According to our research, there are many sources of gratification associated with the caregiving experience, notably to be able to reciprocate. There are a lot of challenges related to caregiving but also positive aspects. Sometimes we don’t acknowledge these positive aspects.

JK: The other thing that we’ve learned is that the older person – in my research it’s mostly an older person – their gratitude, their thankfulness, their ability to allow others to give them support, which isn’t always that easy in this kind of society where we’re all striving for independence or we see that value of independence as being so important, the fact that they’re letting others help to take care of them is in fact viewed as a gift from the caregiver’s perspective.

Moderator: So what’s the single most important thing that we should be doing to improve care for people with dementia?

FD: Right now, as we don’t have any cure for dementia, I think we need to support the caregivers. I think it’s quite a large question, but if we improve support and make sure that caregivers [have] a good quality of life, I think we will help people with dementia.

JK: And I’ll just add to that. I really do think it would be ideal if we could give them a choice of ways that an individual could have really good quality of care so that they don’t feel like they’re obligated; they’re forced to do this.

There are alternatives. You know, if you want to help care for this individual with dementia, this is what we’re going to do; we’ll be able to help to support you in these ways, X, Y and Z. But if you feel you’re not able to do that, we have other care options for you and your family, and that will enable that person to live out a good quality of life.

So I just think that we do need to have support for the caregiver, absolutely, but we also need to not always put it all on the caregiver; we need really good options so that they’re actually able to make a choice.

JF: I think Janice has an important point. As a social worker, I’ve dealt with a lot of dysfunctional families. It’s very difficult when an older person then needs care, when the families have been quite dysfunctional. It’s one thing in a reasonably happy family with just the ordinary kinds of conflict. The problem is there aren’t a lot of options, and I think that’s a glaring omission and a struggle, because we need to help the caregivers who are able and willing to do the caregiving; at the same time, we need to provide some options when that’s just not feasible, and those are in pretty damn short supply these days.

FD: To me, supporting caregivers also means respecting caregivers’ decisions. Support is a large term and means also supporting caregivers who don’t want to [be caregivers] anymore.

Moderator: Thank you all for participating.