Podcast: Care of older adults with dementia and their caregivers
Transcript
Domhnall McCauley: Caring for people with dementia is complex and cost the health system in Canada 15 billion annually. Studies suggest that the care of people living with dementia and their caregivers is not optimal and has room for improvement. I'm Domhnall McCauley, associate editor with the Canadian Medical Association Journal. Today I'm speaking with one of the authors of a review article published in CMAJ on the care of community dwelling older adults with dementia and their caregivers. Dr. Dallas Seitz is a psychiatrist and health services researcher. He is also associate professor and chair of the Division of Geriatric Psychiatry in the Department of Psychiatry at Queen's University in Kingston, Ontario. Dr. Seitz is joining me today from Kingston, Ontario to discuss his article. Hi, Dallas, welcome to CMAJ podcast.
Dallas Seitz: Hi, thanks for having me.
Domhnall McCauley: This is a big issue for lots of us, in community practice in particular. There's a lot of concern about the care of older adults with dementia, and of course, the people who look after them. So tell us a little bit about the the prevalence of dementia in Canada.
Dallas Seitz: The best estimates we have right now of the prevalence of dementia is there's about 550 to 600,000 individuals who are currently affected by dementia. And given that age is one of the biggest risk factors for dementia and our population is aging, it's expected that this number is going to triple in the future. So we already have quite a few people affected by dementia and certainly are going to feel increasing numbers of individuals who are going to be presenting for care and support in the future.
Domhnall McCauley: This is an interesting point, is the prevalence likely to increase? Are we increasing our sensitivity to diagnosis? Are more people getting dementia? Or is the population just aging? Well, what's your view on this?
Dallas Seitz: Well, it's actually complex. I think the biggest thing driving the increase in the prevalence of dementia is the increase in baby boomers and older adults. We know, by the time you hit age 85, for example, which is one of the fastest growing parts of our population, it's close to a third of people have Alzheimer's disease or another type of dementia. So it does seem to be, truly increasing. I do think we're getting more attuned and diagnosing more people with dementia appropriately. Which is probably increasing numbers of people who are being identified, perhaps earlier with dementia. Interestingly, some of the research on the epidemiology of dementia has shown that although the prevalence of dementia is increasing, because of the aging of our population, if you look at the age specific incidence of dementia, comparing people who are 85 years old today, compared to a generation ago, the actual risk for an individual getting dementia is going down. And it's not known exactly why the incidence of dementia is going down. But it's thought to be related to improvements or reductions in risk factors for dementia, like our overall levels of education are going up. And the prevalence of cardiovascular disease which is a major risk factor for for Alzheimer's disease and other types of dementia, those are going down in the population. And so we are seeing that the the incidence of dementia may be decreasing, but certainly the rise in prevalence is going to outstrip this reduction in the incidence of dementia over time.
Domhnall McCauley: I'm very interested in what you said about prevention. But can we focus a little bit just on the diagnosis because one of the things you mentioned was an earlier diagnosis. How good are we at diagnosis? What tools do we have at our disposal to make this diagnosis?
Dallas Seitz: In terms of how good we are at a diagnosis, I think we have reasonably accurate tools that can be used in community based or primary care practices for screening for dementia to have reasonable sensitivity and specificity. The screening tools have to be coupled with, and used of course, in the right context with proper interview from a patient and the caregiver, investigations to rule out potential remediable causes of cognitive impairment like medical conditions or substances and medications, and review of a medical history for medical conditions that might be contributing to cognitive impairment. But we do have tools at our disposal, again, reasonably easy to use, and accurate for identifying people with dementia. I think one of the challenges with identifying dementia is the approach in terms of whether you screen an entire population, or as we've suggested in the article, and research would suggest, taking more of a targeted or case finding approach where you initiate investigations and evaluations for dementia. When there's something about the patient or the caregiver that suggests there may be a higher probability of dementia being present. Those might be well known risk factors for dementia, things like stroke, or neurological illness, or perhaps a presentation later in life with symptoms such as forgetfulness, functional difficulties or sometimes late onset of psychiatric symptoms, which may indicate an underlying dementia.
Domhnall McCauley: I remember a number of years ago, there was great excitement about the potential for pharmacology and for drugs to improve the outcomes of dementia. And of course, that turned out to be a bit of a disappointment. So tell me, what do you think are the benefits of early diagnosis and why should we really make an effort to make an early diagnosis?
Dallas Seitz: Well, I think there's several reasons for establishing an early diagnosis. When you speak to most people and caregivers who are affected by dementia, they want to know if what they're experiencing is a dementia or what is causing their memory difficulties. And so understanding what might be causing some of their symptoms can provide some relief and understanding as to what might be going on. You're quite right, the current available pharmacotherapies for dementia do have modest effects, but they do have effects. So it is important to try to identify people who might benefit from medications and try to initiate medications as soon as it's possible. I would say though, just because our current pharmacotherapy for dementia are somewhat limited doesn't mean there isn't a lot that can be done to help people with dementia. And the mainstay of treating dementia is actually other people. It's supports and services for people with dementia. And so, diagnosing dementia early and identifying both medications but more importantly, the supports and services for people with dementia and their caregivers, is really crucial in order to support them as well as it can for as long as possible. The other thing with dementia is that as dementia progresses, an individual's capability to be as active in expressing their desire for support services, future plans, that gets impaired over time in people with dementia. And so the earlier you can diagnose people with dementia, the more involved they can be in guiding their own care and their own expressed wishes. Which may be more difficult later on when their cognitive abilities to sort of understand and appreciate the things that might be best for their particular situation might be compromised. So I think there's a number of reasons. And truthfully, I would say most of the people I see in my practice, who are diagnosed with dementia, they quickly move from receiving the diagnosis to an action oriented phase. Well now that we know what it is, what can we do about it? And I think that that part of the conversation is really beneficial for people to have that as early on as possible?
Domhnall McCauley: Can I bring it back down this just to your description of the modest effects of the of medication. Because as clinicians, we're often under pressure to prescribe. So can you give me a feel for what we can say to patients about the likelihood of benefit? My understanding that, I don't want to be terribly pessimistic, is that the medications have very minimal benefit.
Dallas Seitz: The currently available medications, which include two classes of cholinesterase inhibitors and memantine and certainly have the most evidence for cholinesterase inhibitors. My interpretation of the research literature on cholinesterase inhibitors are, compared to placebo or no treatment, about 30% of people will have temporary stabilization in their memory, often for a period of 6 to 9 months. A smaller portion of individuals will actually have an improvement in their memory. Perhaps around 10%. And then a number of individuals will have less benefit from the medications. It's really difficult to identify in advance, who are going to be those individuals who are going to experience the benefit in terms of the stabilization of cognition or improvement. So it is really recommended that people at least be offered treatment with cholinesterase inhibitors. So, while they do have modest effects, I do think that it's important to be aware of the risks and benefits of the medications and be prepared to have a discussion with the person who's affected by dementia and their family members. Most families I talked to when I give them those types of numbers, along with a discussion of the potential side effects, most of which are not serious, do opt to proceed with treatment, because they want to be doing everything that they feel they can to try and keep their cognition as best as they can for as long as possible.
Domhnall McCauley: So, let's discuss the early diagnosis. So I'm sitting in the consultation with you, Dallas, and you've prepared to say that I have mild cognitive impairment, and you think it's the early stages of dementia. So what should I do next? What is your advice to me as the patient sitting in front of you? What are the steps I should do?
Dallas Seitz: So in addition to, perhaps a discussion about medications, and that's not certainly the focus of the discussion, and I work in a geriatric psychiatry outreach program. So, in terms of general lifestyle recommendations, we always talk about things like looking at a heart healthy diet, lots of fruits and vegetables, staying away from saturated fats, ensuring that people remain physically active both for their physical health, but also to help with their cognition, although the relationship between exercise and cognition is quite complex. I try to counsel people to try and remain cognitively active as possible, and preferably doing enjoyable social activities, which have the benefit of helping people's mood, but also stimulate a number of different parts of the brain like memory, social skills, language. So looking at those lifestyle type factors. Then for each individual, it's really quite personalized in terms of what things may be both available for them, and which may be most helpful for them at an early stage. So typically, for someone who is diagnosed with fairly mild dementia, or very early on, we would make a recommendation that a referral be considered to the Alzheimer Society. The Alzheimer societies have a number of very useful programs, some of which are geared to the person with dementia in terms of teaching skills and approaches, and future planning for themselves. But also importantly, programs and supports and training for their family members or care partners who benefit from this type of information. One thing we also review at the time of diagnosis is making sure that medical conditions and psychiatric conditions if they're present, are being optimally managed. Most of the people that we see with dementia are in their 70s and 80s when they're diagnosed, so ensuring that they have good general medical care. And that we're treating and managing any psychiatric conditions which may be present, is important. And we focus a lot on safety as well. Ensuring that issues such as driving safety, household safety, such as cooking, or possibility of wandering or injury, that those things are being reviewed and discussed. It's also extremely important, most of the time when we have someone presenting for an evaluation for their memory, they'll have a family member or a care partner who's there with them to support them. When we do, ensuring that that person's needs are met in terms of supports for the care partner, ensuring the care partner is receiving appropriate medical care for themselves because that's one of the first things that they often neglect is their own health and their own medical and mental health. So, really trying to also assess and support the needs of the caregiver. Who are key in supporting the person with dementia and really important to keep them healthy and well supported.
Domhnall McCauley: In terms of the carers, this is a big issue for people in the community, what services are available? Is there respite care for the patient? What can carers access in the community to help them survive the difficulties of managing a close relative, for example, with dementia?
Dallas Seitz: Yeah, it varies quite a bit across the country. So I would be speaking, you know, about services that are available in most places, but also bringing my own perspective from from Ontario. One of the key supports for caregivers is the Alzheimer Society. And again, the Alzheimer societies, and many of whom have what's called a first link program, which involves sort of a introduction to dementia supports and services. They provide very useful information to help caregivers understand the changes that are going on with dementia, I find one of the things that's extremely helpful for care partners, in terms of supports they can receive from the Alzheimer Society or through other programs is training or an understanding of ways to approach communication with people with dementia. Because your approach to communication with an individual with dementia, although it's still your same relative, because of the cognitive changes, it's important to sometimes shift the style that you communicate or the type of information that is that is communicated, to take into account that cognitive difficulties. And also to ensure you're having a successful interaction with an individual and getting some support and training around that can really, be helpful in terms of relieving stress and frustration for the caregiver and the person with dementia. The Alzheimer Society programs also have a lot of peer support programs. I think there's validation that comes from learning that others are experiencing similar situation as you, but also a lot of knowledge that is shared from lived experience that people have figured out, or tips and tricks that they share at these caregiver support groups, which can be very helpful. So that would be one of the first recommendations that we would make as a referral to the Alzheimer Society or at least to the resources of the Alzheimer Society if people decide that they're not ready to make an in person visit at first. Now, depending on the person with dementia, they may or may not need medical support or support with personal care. Dementia can affect things like mobility and self care, and also the comorbid medical conditions that are frequent in older people can also impact on functioning and that way. Often that care can fall on caregivers or family members who may not be available to complete this care, or may not feel comfortable, or that they truthfully have the skills to do this care. So connecting caregivers with homecare services or supports that can help with some of the physical care needs of their loved one can be very helpful. Ensuring that the caregivers mental health is maintained and their stress is minimized is also important. One of the key things is trying to help caregivers to maintain their connections to their social lives, their hobbies and activities, their other family members, their ability to take care of their own health, and attend medical appointments. And also as a loved one develops dementia, an increasing load of household duties falls upon the care partner. So looking for opportunities to provide respite for the caregiver, so they have time available from directly supervising or supporting the person with dementia, to be able to take care of their own needs or increase the demands on them at home is really important. And that can be everything from someone from a homecare agency or volunteer agency coming into the home to spend time with the person with dementia, which can also be very beneficial in terms of providing social contact and stimulation for the person with dementia, or other forms of respites such as adult day programs where a person with dementia may go in a morning to an activities program, have a meal there, an enjoyable day in a supervised environment where the caregiver is then able to have some time to themselves, or some time outside of the house to take care of activities. And another thing that's very helpful for caregivers is having, really, a quarterback or a point person in the healthcare system that's helping put all this together. In most places, the people who are delivering home care and organizing the adult day programs, medical care, their family doctor and the Alzheimer Society are all separate organizations. Knowing what supports and services are available, how they might be helpful, how to connect with them, and when to connect with them, it's really hard for a caregiver to do on their own and it takes a lot of time if you're not familiar with the system. So having a care manager or someone on a healthcare team who can be that point person and help organize supports and services, and connect them to the caregiver in a timely fashion, can be extremely helpful for caregivers.
Domhnall McCauley: And do these people exist? Where would a carer find someone like that to help coordinate the system?
Dallas Seitz: I think in different areas, we see different agencies taking on this role. So, in some jurisdictions, for example in Quebec and outside of Quebec, they've looked at having a nursing resource in a primary care setting who becomes sort of the dementia point person to help with this. I think some of these roles are managed by the Alzheimer Society First Link Coordinators and support programs. My own program, which is a geriatric psychiatry case management program. This is a large part of what we do. I, as a consultant on the team, have a very small role compared to our nurses, who are really the brokers and advocate for the patient and family members and spend the majority of their time making connections and mobilizing services for people with dementia. So I think these roles can be provided by different individuals in different sectors. Not all places would have these available, but I certainly think that if we want to look at research evidence, having a care manager or point person to organize care, and we see this also in other complex chronic conditions like cancer, has really been shown to be one of the most effective and cost effective interventions or supports that can be helpful for people with dementia.
Domhnall McCauley: Sadly, it's a condition that almost inevitably gets worse. My experience and practices, that the most difficult period of time, is that period of time just before residential accommodation becomes necessary. It's that time where the carer feels guilty and upset, and the patient becomes more and more difficult to manage. What's your advice at that stage? What is your threshold for admission? At what stage should the caregiver say "Look, I just can't manage anymore. It's time for residential accommodation."?
Dallas Seitz: It's a very difficult situation and really different for each individual. We certainly see people who early on in dementia journey are really struggling with the change in role because of their availability, and others who are able to completely avoid long term care admission. When I feel that there's significant safety issues in the home because of resources that are available, either from the family or the community, that are not going to be sufficient to provide support and supervision for the person with dementia. I think that that's one of the key things that I get concerned concerned about. Certainly a caregiver who seems to be experiencing a great deal of distress, which, even after all supports have been mobilized and everything has been done to sort of optimize care in the community setting, has not been enough to relieve the stress and it's really having an impact on an individual's quality of life. I think that's important. Certainly, when an individual's care needs, of physical care needs, become more than what a caregiver can manage at home. That is also a time for consideration of long term care if if those care needs can't be met by community services. So it may be the person with dementia having more difficulties with things like bathing or incontinence, which can be very difficult for caregivers, where they may need admission to long term care. There may be behaviors such as difficulties with sleep or other changes in mood, which may be very difficult to manage at home without significant support. So it's really quite variable on an individual. But I think it's important to have those discussions early on. And I often frame the discussion with caregivers and family members, if I'm starting to feel that we're getting to a stage where that might be more of a difficulty or, moving towards long term care, I often will ask a caregiver, a care partner, about how will they know when the time might have come for them to consider a long term care admission. And sometimes, they'll be able to say "Well, if I'm not able to, person needs a lot of hands on personal care, I don't think I'll be able to manage that on my own. Or if wandering becomes an issue, I'm not sure I'll be able to manage that anymore on my own." At least gets caregivers and and their team thinking about some of the signs that we may be having to move towards those directions before you get to a complete crisis or situation where the support system is really broken down because we've waited too long.
Domhnall McCauley: One of the other issues I'd like to ask you about, Dallas, is that often, there's a difficulty deciding on mental capacity to make a will. What advice do you give to patients and at what stage do you think they should make a will? And how do you judge if someone has the mental capacity to make a will?
Dallas Seitz: So it's a complex, situation with wills. And there's also provincial differences in this. I think one of the benefits, again, of early diagnosis is really having a discussion around advanced care planning. Around things like wills, powers of attorney, those types of legal documents and arrangements. Early on in dementia, most people would retain their ability to be able to make those legal decisions. Things like a will are, usually the capacity to actually assign a will, is often made between the individual who's making the will and the other parties to it, often their lawyer. And so the decision around capacities sometimes falls to more the legal perspective than the medical perspective. But some of the things that I look at when trying to understand someone's potential capability around finances and wills are, do they understand what a will is? Do they understand who their beneficiaries of the will could be and what the implications for that might be? What's their understanding and appreciation of their current legal situation in terms of things like their income and expenses, and the extent of their estate. So those are things that I look at and sort of consider with an individual, when there's a will. Things certainly get more complex and formalized in situations where there's perhaps a much more complicated financial estate, or planning involved. Where the capacity to understand and appreciate the implications of will might be very different than a simple estate. And also, if there's any sort of conflict between spouses or children or people who might be beneficiaries, then that becomes a little bit more complicated in terms of understanding an individual's capacity to be able to assign a will and understand the implications of that. But the best thing is to really discuss that as early as possible with a patient and have them assign wills, powers of attorney, or any of their advanced care directives as early as possible, while they still have their capacity, rather than waiting later on where it may be more difficult to understand or assess capacity.
Domhnall McCauley: Earlier in our conversation, we discussed prevention. And we read lots of articles about prevention and suggestions that we should be doing crossword puzzles, we should be keeping fit, we should be learning a language. What are your suggestions on prevention? What can you and I do, Dallas, to make sure we don't end up as one of your patients?
Dallas Seitz: Well, the first thing is don't wind up as one of my patients with depression. So depression and mental health has a strong relationship to dementia. But that aside, I think in terms of things that are modifiable risk factors for for dementia, really looking at cardiovascular health. So things like everything that we would counsel to prevent strokes and heart attacks, really applies to dementia. Being physically active, meeting at least the minimum recommendations around exercise. Eating those heart healthy diets. Trying to have enjoyable social activities. Keeping your mind active. Part of this is building reserve and building a healthy strong mind. So having education and try to engage in cognitively stimulating hobbies and work environment throughout the lifespan. And then, later on trying to maintain cognitively challenging activities. In terms of things like brain games and brain training, I think the evidence right now is a bit mixed, because there's a variety of approaches that have been looked at. My general recommendation to people is to try and keep their mind active with something that's enjoyable. So if they enjoy crossword puzzles, or doing puzzles, or hobbies, or playing bridge, encourage them to do that. Engaging in social activities, which is quite cognitively stimulating. Anything that sort of keeps the mind active and is enjoyable, I think is really important to to look at. And we know that prevention of head injuries through accidents, falls, concussions, these are important for maintaining brain health. Managing our medical conditions, if we do happen to have things like diabetes, or heart condition, really trying to optimize treatment for those, because anything that is going to stress your physical or medical health is going to have an impact on your cognition and memory. So trying to maintain that. We always talk about substance use as well.
Domhnall McCauley: Oh, you hadn't mentioned alcohol. So, so far I thought it was all good news.
Dallas Seitz: So with alcohol, marijuana and prescribed medications. I often see older adults who are taking over the counter sleep aids, which you can walk into a pharmacy and just grab off the shelf, which can have anticholinergic effects. Really trying to minimize the number of medications which can have an adverse impact on the brain, both from a prescribed and over the counter perspective, and also trying to minimize the use of alcohol and other substances, which can have an impact on brain functioning. I certainly counsel my patients who have cognitive symptoms to minimize their use of alcohol to as little as possible, and for people who don't have cognitive symptoms to try and maintain their drinking to a safe level for seniors, which is different than for younger people.
Domhnall McCauley: So we'll finish off here. Now we talked, really it's very much a focus on community dwelling, some care in the community. So if you could give, I mean, this is so important for our family medicine colleagues, would you have a one minute message for our family medicine colleagues about dementia in the community?
Dallas Seitz: I think, number one, there's a lot of things that can be done to help people with dementia. And I think, understanding and knowing about the local supports and services that can be helpful for the patient and the caregiver is really important. And I want to emphasize the benefit that can come from a compassionate diagnosis. And really trying to proactively connect people with those supports and services as early as possible can really have a big impact, big long term impact, on the patient and the caregiver. If anything, I want to instill a bit of optimism, that there is a lot that can be done to help people with dementia. And while the medications may not be that robust in terms of their effects, there are a whole host of other things that can have very clinically an important impact on people with dementia and their caregivers aside from medications, that we should probably really bring to the forefront of our thoughts when we're thinking about dementia management and supports.
Domhnall McCauley: Dallas, it's been a real pleasure talking to you. I've learned an awful lot. Thank you very much indeed.
Dallas Seitz: No problem. Thanks, Domhnall.
Domhnall McCauley: I've been speaking with Dr. Dallas Seitz, psychiatrist, associate professor and chair of the Division of Geriatric Psychiatry in the Department of Psychiatry at Queen's University in Kingston, Ontario. Dr. Seitz co-authored a review article published in CMAJ. To read the article, visit cmaj.ca. If you've enjoyed listening to this podcast, we encourage you to subscribe to CMAJ Podcasts in Apple Podcasts or your favorite podcast app. And while you're there, we invite you to listen to our many past episodes and leave us a rating. I'm Domhnall McCauley, associate editor for CMAJ. Thank you for listening.