I’d like to begin this discussion by talking about the latest publication from the Alzheimer’s Association, which is their 2017 monograph on facts and figures. They update it every year, around April. So next year you’ll be able to get the latest from that time frame. So what we know now is that more than 5 million Americans are living with Alzheimer’s Disease and these individuals are cared for primarily by unpaid family members. In fact, there’s about 15 million unpaid family members who provide 18 billion hours of care, of a variety of kinds of care depending upon the needs of the person, and that’s economically valued at about 230 billion dollars. So, we are facing a situation where if the family caregiver is not given support and encouragement, and if we can’t figure out interventions to help them do their work well, and continue to thrive in their own quality of life, we are going to face a severe economic problem as well as have an emotional toll on everyone concerned. So it is extremely important that we try to figure out how to understand the kinds of issues that caregivers have and develop a variety of programs that will support them and help them stay in their role, do it well, and also maintain their own quality of life.
How do different racial and ethnic cultures play a role in caregiving? Are there particular demographic differences when it comes to certain aspects of caregiving?
That’s a really important topic because we have such a diverse society in America and we are all applauding differences and trying to embrace diversity. We need to adhere and understand this in caregiving as well.
So there is no one size fits all when we talk about caregivers. They’re very unique, and it is unique who takes on the role and how they carry it out. It’s very much influenced by their cultural background.
The way we like to approach it is to begin by asking people, “What are some of their beliefs about dementia? What is their understanding?” We find that that varies greatly from one cultural group to another. So for instance, some people might think that it is an act of God; that there’s nothing they can do about it—that is just happens. And it might be due to Karma of their ancestors or their own Karma that they are, in a sense, paying for or making up for.
So some cultural groups believe that, and that’s very different from the western biomedical perspective that says that Alzheimer’s Disease is a result of changes in the brain, death of brain cells, presence of neural fibrillary tangles, presence of amyloid beta. So these can lead to misunderstandings if we talk of a biological or biomedical approach and the person we’re talking with doesn’t really understand that or believe that is what is going on.
So how that affects caregiving: there are also different expectations. So, for example, in many Latino cultures, it is expected that the youngest daughter takes the primary caregiving role. And that individual will be supported by other members of the family, but it is basically her job. Whereas in many Asian cultures, the eldest son in considered to be the primary caregiver. In point of fact though, the eldest son doesn’t usually provide a lot of hands-on care, so what happens is that the wife, or daughter-in-law in this case, is the caregiver, but it is under the authority you might say, or the direction, of the eldest son. Again, that is very different from many families in the United States where there is no particular designated caregiver. It could be anyone who steps up to the role. Anyone who feels that this is something they want to do. In the case of spouses, it is typically the other spouse if that person is alive. But not always because there could be relationship issues and many reasons why that is not going to work, or sometimes the other spouse is ill themselves. Though even though they would like to take on the role, they can’t. So there is no one size fits all when we talk about caregivers. They’re very unique, and it is unique who takes on the role and how they carry it out. It’s very much influenced by their cultural background.
A significant portion of your research focuses on the importance of caregiver intervention, and providing proper treatment and training for professional and family caregivers. Would you say the general caregiver population is aware of interventions available to them? What are the potential benefits they might expect to experience?
Well, the field on intervention research is a very broad field, so there are many different kinds of interventions that are offered to caregivers. For example, respite care is an intervention that’s been really helpful for many caregivers, where they get to have some time off, where their loved one is in a safe place, overnight usually, maybe two or three days at a time. Sometimes caregivers use that time to get their own health matters taken care of, or sometimes they just get a rest. So respite is a very powerful intervention for many. But it’s not available in parts of the country, and it’s expensive — it can be expensive. It’s an out-of-pocket cost, Medicare does not cover it. So it’s for the few who can afford it, and where it’s available.
There are many programs, and unfortunately people seem to have limited knowledge, still, of the array of programs that exist.
But the kind of interventions that I’ve worked on have to do more with psychological stress and emotional well-being of the caregiver. So, not so much taking care of their practical issues, but their emotions. Most caregivers find that they have a real array of emotions and many of them are negative, and they’re not used to that, you know? People get depressed, they get anxious, they get fearful for the future. They get frustrated with the person, their loved one. They don’t want to get frustrated with them, but they do because of the kinds of behavioral changes that occur with Alzheimer’s and other dementias. So most caregivers, in my experience, have emotional distress. They also report high levels of stress. And the more advanced the dementia becomes – dementia is a progressive, degenerative disease – so over a period of time, the individual often cannot provide their own self-care anymore, and the caregiver has to take over very personal functions. So at that stage, the later stages, it’s even more stressful.
So in the beginning, they may be able to make a good adjustment because they’re still able to communicate with the person with dementia. Then the middle stage, they have a lot of behavioral problems to deal with, and there’s a lot of the frustration and guilt, feeling that they’re not doing enough. They oftentimes feel something that they did might have precipitated this. So there’s a lot of misconceptions about dementia. But then in the final stages, when there’s a lot of self-care needed, that’s when the caregivers are most stressed. And many of them at that point, emotionally, go through a grieving process. So you might say grief is going on all through that trajectory, and it probably is at some level. But you really see it more as the person progresses to later stages. So you have this very complex mix of emotions. And in the midst of it all you still want to have positive feelings towards that person, because it’s your relative – your husband, your son, your sister, your brother, your mother, your father.
Balancing those emotions is a complex task, and the interventions that I’ve developed, that’s what we work on. We have individual, one-on-one types of programs where we offer people support, information, and some skill-building. We have group programs, where they gain knowledge and support from each other, as well as information about how better to cope with these issues. I’ve developed a DVD-based program for Chinese caregivers; it’s in Mandarin Chinese. We have a web novella, totally in Spanish, that’s for Latino caregivers. It’s a dramatic series of episodes, like a soap opera, about how an intergenerational family copes with the changes in their grandma. It’s both entertaining and informative, so that’s another type of intervention. We have a web-based program, it’s called iCare Family, and that’s available on the internet. We’re hoping now to move into the use of more technology to support caregivers, so there’s a wide range of programs that I think are appropriate and helpful.
From the caregivers’ perspective, how might being a caregiver, either formally or informally, affect their own social connections?
It takes a very strong friendship to be able to survive that over time and still come back for more.
Well for most caregivers, it does affect their social connectedness in a negative way because they find that there’s less and less opportunity to do things with other people. A common example: they’re asked by a friend to go to lunch or to go have coffee, and they have a conflict because they’ve got to take their loved one to a doctor’s appointment – can’t change the doctor’s appointment, too hard to do. So they might try to change the lunch date or coffee date with their friend, and then the friend might suggest another day and time and there’s another conflict, because we have to drive so-and-so to their physical therapy appointment, or to their occupational therapy, or their speech therapy. For many people post-stroke, they need multiple kinds of therapies, and so they often can’t drive. The caregiver finds that over time, the friends are not quite as flexible, or they are not as satisfied with hearing so many “no’s” and trying to rearrange things all the time. The invitations drop off, so that’s something that’s very common.
Another thing that’s common is because of the behavior problems that people with Alzheimer’s demonstrate, particularly from the middle stages on, like wandering away or, if they’re sitting at a table eating they might use the wrong utensils, or if they’re talking to people they might lose their sense of propriety about what they should say and not say. So sometimes they blurt out words, or they curse at people, or they get very emotionally upset. This is embarrassing, not just to the caregiver but to the people that you’re with, your friends. It takes a very strong friendship to be able to survive that over time and still come back for more. So their social network gets smaller, the number of people that are interested and available to do things with, who understand that the person has dementia and this means there are going to be issues, probably.
Also, the time that they have to spend with people diminishes, real time. They might be able to spend on the phone, or spend time over the computer, emailing and sending things back and forth, but the real time is less. And then finally, you have the issue that many families are living apart from one another geographically, and so there’s distance to deal with. Suppose that you’re a wife taking care of your husband with dementia, and you would like to have more contact with your daughter, because you really enjoy contact with your daughter, and you enjoy going places together, and you’ve always done that in the past. But the daughter has moved away because she’s gotten a wonderful job opportunity somewhere, and so she’s not available to you. So the network and the source of support may shrink through no fault of your own, but just because life circumstances change.
But I do think that we can deal with that, I mean I don’t know that we could solve it 100%, but I think we could help caregivers to get more support from one another. This is something that’s attempted through the Alzheimer’s Association. They are a national organization, and they have a network of support groups. These are offered in different locations throughout the country – again, some regions are more resource-rich than others – but these support groups enable the family members to get together in a safe place, without stress and pressure, to talk to one another. “What have you learned?” and, “How have you dealt with this or that problem?” Or, “What products do you buy that help with the situation?”
So that’s one thing: face-to-face support groups are really helpful to caregivers; many caregivers don’t know about them, which goes back to the previous question, how much do caregivers make use of the programs that are out there? And the answer is, not as much as they could, not as much as all of us who develop the programs and have them to offer, not as much as we would like. We’re constantly outreaching to caregivers, particularly to caregivers of different cultural and linguistic groups, to let them know that at least in the bay area, there are programs for them and we welcome their participation. Caregivers many times are embarrassed to seek help outside of the family, and so we find that things have to get sometimes to a crisis point before they actually will seek help.
But there are many services out there, Area Agencies on Aging, the AAA, that’s a way to find out about services if you don’t know. You say, “I’m just lonely, I need somebody to talk to. How can I find somebody to talk to who’s in a similar situation to me?” The AAA, the Area Agency on Aging, there’s one in every county in California, and you can look up the number, you usually have to phone them, and you tell them what it is that you’re looking for, and they try to help — that’s an important resource.
The Alzheimer’s Association has a national website, it’s www.alz.org, and if you go to that website and put in your zip code, they will tell you things that are available in your region. You can put in several zip codes for the towns around you, and then you’ll find out what’s available where you live. Those are good starting places, good places to find out what’s out there so that then you can pick and choose maybe, or try one and see how it works, and if you like it, then maybe you’ll avail yourself of others. But there are many programs, and unfortunately people seem to have limited knowledge, still, of the array of programs that exist.
How do those receiving care, predominately older individuals or those with health issues, describe their relationship with the caregiver?
Oh, how does the person who’s receiving the care describe their relationship with the caregiver? That’s an interesting question. Well, it hasn’t been studied much. Most research has been with the caregiver alone. Not many studies have been done with the dyad, the caregiver and the care recipient. But the few that have reported, where they have been able to get some response from the person with dementia, people are typically appreciative in the early stages, because they know they need help. They’re beginning to fail; they see that their memory, their problem-solving, their ability to handle everyday situations, it’s just not the same as it was. So they get support from the family members and they appreciate it, they’re able to express that.
In the middle stages, where you see more deterioration, more brain changes have occurred, you see the behavior problems, that’s a tense time for a lot of people. Because the caregiver is trying to manage the behavior problems, reduce them in frequency, find out the triggers. So there’s more stress in the relationship. In the later stages, that’s when the person with dementia typically has lost their awareness. They oftentimes don’t even recognize the caregivers anymore; they don’t recognize their relatives. Their brain has been shrunk to the point that those important brain functions just aren’t there anymore. So at that point they’re usually not able. But some research has found that actually in those later stages, nonverbal communication is really important, because they can’t speak often. But nonverbal, like reaching out and holding someone’s hand, or touching them on the shoulder, or some people in the later stages will try to kiss their partner. They’re trying to express their emotional connection, even though they don’t have the words for it. It’s very touching to see that, and I’ve witnessed that a number of times, and it helps me to realize and to remember: no matter what stage they’re in, there’s still a person in there. We need to respect that personhood and see what we can do to bring it out more, to encourage them to express themselves nonverbally.
There was a recent news article in the Washington Post that explained that caregivers are expected to do physically and emotionally demanding work for an extremely low wage. Because of this, fewer and fewer people are entering the caregiving career at a time when the elderly population is only increasing. How do you imagine caregiving to proceed in the future? Over time will it increasingly become a role to be taken on only by family members?
Well there are several questions in there. The more people know about Alzheimer’s and other forms of dementia, and they know what the demands of caregiving really are, it’s true that less people are willing to take on the role – that does seem to be a trend that we’re finding. But we also find that, for example, blended families where you have several people in a parent role, and you have multiple children, and different relationships. In blended families, they seem to be able to work this out a little better, because there are more people, and people negotiate the roles. So that’s a possibility for the future.
Another possibility though, I think, is that we’re going to have dementia-friendly communities. There’s a task force that I’m on, because Santa Clara County – one of the largest counties in California – is designated to become a dementia-friendly community. And so we’re trying to figure out what does that mean? How can you create a safe environment where you have multiple helpers, who may or may not be family members, but they willingly enter into this contract to live in this community and help one another? It’s in the very early, formative stages, so I don’t have much more to report. But I can say that’s a national movement too, to create dementia-friendly communities, where the burden is not totally on the family, nor is it on paid help. It’s on people helping one another who voluntarily enter into that commitment. So I think that’s something to watch for the future.
The other thing I think is important for the future, where this is going, is that we need more home health workers. We need people with suitable training to commit to the home and provide some relief to the caregiver, and provide some basic care of the individual – maybe it’s bathing them, maybe it’s helping them eat, maybe it’s taking them for a walk because they need their exercise. Even if it’s only a couple of hours a day, that would give the caregiver a little break where they could do more to take care of themselves. Right now that’s a service that Medicare does not pay for, and so it’s private-pay, and because of that it’s limited in who can avail themselves of this. But for the most part now, some counties have programs supported by county funds, and if you meet a certain income level of eligibility, below a certain level, then you can be eligible for the county program. And I’ve seen how having an in-home support worker can really make a difference in the caregiver being able to stay in their role, function longer, and function better with that quality of life because they’ve had that break. Maybe they’ve had a couple hours off in the middle of the day to take a walk themselves, or see some friends, or do some shopping that they wanted to do, and it changes the whole attitude because positive activities are just so important to maintaining mood.
I talked earlier about the varied emotions that caregivers have, many of which are negative and unfamiliar to them, because most people don’t have that much depression, or anxiety, or guilt, or frustration in their lives up until that point, so they don’t know how to deal with them. So one of the main things we’ve learned in ten plus years of research is that if you include positive activities in your day, that you have deliberately, consciously selected and planned for, that you can buffer negative events happening, negative experiences, so you keep your mood up.
This is a message that I would love to get out to caregivers, I’ve been trying to for a long time, namely: “Four positive activities a day keeps the blues away.”
That’s a good take-home message, but it has to be four things that are consciously chosen, and deliberately done. So it’s not just, “Somebody called me and I was glad to hear from them,” because that just happened. It needs to be that you, maybe you’re initiating the call to someone that you want to reach out to but haven’t talked to in a while. So that’s an activity that you’re planning to do, you make the time in your schedule to do it.
Many of the studies that I’ve done have been attempts to show caregivers how to do that, how to build in pleasant event scheduling, positive activities, and how to reward themselves for doing it. There’s a technique to doing this well, and many of our programs use that technique; it’s also been disseminated widely through our education programs. That would be a message that I think would be very helpful for caregivers for the future to keep on doing that. You don’t just do it one day a month or two days in a week or something, you need to do it consistently, every day, plan it: four positive activities, make them happen, and if you do that most days of the week, you will be able to buffer yourself against some of the negatives that are unfortunately common with caregiving.
No matter what stage they’re in, there’s still a person in there.