The Importance of Family Caregivers

The Importance of Family Caregivers: A Discussion with Kathy Brill, Yanira Cruz and Sandy Markwood

As a new generation of Americans move into the 60 and over Age group, we as a society are beginning to re-think how we perceive aging. The idea of maintaining personal independence and autonomy is a commonly accepted idea, and yet we still have many misconceptions about what will happen as we get older. Some of this is due to aging still being a taboo subject for some, or an aversion to talk to younger generation s about aging and ultimately our own mortality. When we put our heads in the sand about aging, however, we are making a grave mistake and deprive ourselves and our families of creating plans and processes that will allow us to age as we wish. One of the major issues at play is caregiving and the supports and resources to help individuals live in the way that they see fit. While individuals with disabilities may already be using caregivers there is a need to consider how that relationship evolves as they age, and for the remaining older Americans, serious thought needs to be given to how they will decide what sort of family involvement and care they will need as they move into age related disabilities.

We sat down with NAB Members Kathy Brill, Yanira Cruz and Sandy Markwood to talk about the importance of family caregivers and to consider how we can make caregiving a regular part of our family and aging process. To create a good aging plan for ourselves it is important to consider the roles of caregivers as many of us will perform that role, and receive care from a caregiver in our future.

Who typically is filling the role of caregiver?

SM: The National Alliance on Aging and the AARP survey on caregiving highlights that the typical caregiver is a middle aged woman who is between the ages of 46 – 48 caring for a parent who is in their late 70s. Most of these caregivers, the survey found, typically have a job – whether full time or part time, and these individuals often have other caregiving responsibilities for children — depending on whether they are adolescents or adult children. There is a lot of push and pull on that individual to care for kids, to care for their spouse or parent, and to care for and to maintain a job. Most caregivers don’t even recognize themselves as caregivers, or recognize the caregiving responsibilities — which oftentimes they don’t define as responsibilities. It is just what they do to be a good son or daughter. The caregiving role, however, is expanding beyond just the adult daughters.

More and more men are stepping into that role as well as children who are also taking on helping with caregiving. Caregivers note that it really is an all-inclusive type of responsibility: It is an opportunity to keep an important and treasured connection with an older adult or person with a disability and doing so has a huge personal and societal value as well.

“The typical caregiver is a middle aged woman who is typically between the ages of 46 – 48 caring for a parent who is in their late 70s. Typically, the caregivers have an additional full time job and often have caregiving responsibilities for children as well. More and more men are stepping into that role as well as children are also taking on helping with caregiving tasks.” – Sandy Markwood

 

KB: We have a tendency to want to create categories to understand better, but if you think about all of the stories that you know, there are even young siblings being caregivers for younger siblings. Grandparents also do a lot of caregiving for children. When it comes to caregiving we try to do our very best with who is in our lives. So many families – I am well aware of single parents who often have to go to work and the eldest child has to act as family caregiver. These are issues we must consider: If a child is being a care giver and it “appears” to outsiders it is running smoothly – -is it really running smoothly or do we need to further examine the family and ensure that the family has what it needs to be successful? Is the caregiving that is currently in place sustainable? Is it able to support the growth toward independence for the individual receiving care, or is it merely able to do basic caregiving tasks for survival?

YC: I would add that one of the things that we’re hearing from folks who are taking part in NHCOA’s Thought Leaders Roundtable in different parts of the country, is the whole idea that we have a “sandwich generation” of caregivers. These are individuals who are caring for their loved ones, while also raising their own children. So this group finds themselves with young families and the responsibility of having to care for those children but also having to care for or need to support someone with Alzheimer’s or with other chronic illnesses. That is creating a lot of pressure.

The other thing we are hearing is about Millennials having to step in to a caregiving role. This was not the case in the past – not as much as we are hearing now and there are some reports that are being developed that document that reality. (AARP recently published a report on that very topic.) Many diverse populations and communities of color are stepping into this role as caregivers with some challenges that they are facing themselves as caregivers.

“In many situations, caregivers are stepping into the role with limited financial support and as a result of the new responsibilities that come with being a caregiver, their financial realities become more cumbersome and difficult. The other thing we are hearing is that some employers are not allowing caregivers to take time off of work to care for loved ones. This is particularly hard for family caregivers.” – Yanira Cruz

What skills do Family Caregivers need to have?

KB: This is a big one in the disability community. It is very important that we get families to think about independence at day one. Family caregivers have to be able to balance their role as a caregiver and know when to act as a caregiver and stop and act as a family member. Sometimes family caregivers of young people with disabilities can inadvertently hamper the social development of their children with disabilities. This is done with good intention, but not being able to find a good balance of care and personal freedom can cause young people with disabilities to miss out on important developmental steps and experiences – including some healthy rebellion. As a part of your development you are supposed to be rebellious at certain ages because you are trying to break out of that child role and transition to adulthood. When family caregivers impede that experience, young people can feel as if they are not allowed to do anything. When this happens, we are really causing harm and have got to allow our children with disabilities to see themselves in the same way that they see other children and allow them that same trajectory toward adulthood. One solution to this is considering when it is time to transition from a family to a non-family or professional caregiver so that children as they grow and learn to be with someone else other than brothers and sisters or Mom and Dad who might be a little bit too protective..

YC: In addition to the caregivers themselves, it is important to train health care providers on the realities of caregivers with whom they are working – particularly family caregivers. This is an area that I think is very important and one that we as a society are not doing enough. In many situations, family caregivers are being placed in situations to have to do things that are pretty clinical in scope and they do not have the necessary training to do those things.

It is very important that we advocate and urge health professionals to be trained on the reality of caregivers they are working with. In medical school clearly we are not teaching that, and schools of public health and nursing we are not teaching that, and I think we need to make a push to urge and demand that this training take place because what is happening is really not serving our families or our caregivers well.

“If we can support caregivers with the level of individualized support they need to maintain their own health and stress levels, it could increase capacity to think more clearly and thereby provide better caregiving, be a better person, and family member.” – Kathy Brill

Are there particular hurdles that this new cadre of caregivers is facing?

YC: In many cases, caregivers are stepping into the role with limited financial support, and as a result of the new responsibilities that come with being a caregiver, their financial realities become more cumbersome and difficult. The other thing that we are hearing is that some employers are not allowing caregivers to take time off of work to care for loved ones. This is particularly hard for family caregivers. Many diverse communities are working in areas where there are not protections or policies in place for employees to take time off from work. Specifically in the food industry construction or hotel industry. Where those protections are not in place it is difficult for caregivers to take time off and they can end up losing their jobs, or they have to cut their hours to be able to accommodate their schedules to provide care. This also means that there is a reduction in their economic reality. The other thing is that many of our caregivers that attended our Thought Leaders roundtable are also telling us that the caregivers themselves are facing multiple chronic illnesses because there is already a poor health status among caregivers that are caring for loved ones. That is a reality that we must address as well. We have caregivers that have to deal with their own chronic illnesses. Not to mention if they are caring for someone with Dementia or Alzheimer’s, the stress for caring for someone with these illnesses is huge and can often lead to other illnesses that adds to the caregivers’ stress.

I don’t want to leave out the LGBT population and that often times LGBT communities feel very isolated and often do not have blood relatives to care for them. Their support is often a friend (who becomes like a family member) so the challenge to not feel isolated for LGBT Communities is very real. (I just finished an interview for NPR on this very issue which should be posted in early December)

“Often times LGBT communities feel very isolated and often do not have blood relatives to care for them. Their support is often a friend (who becomes like a family member) so the challenge to not feel isolated for LGBT Communities is very real.” – Yanira Cruz

 

SM: As this nation faces not only a dramatic rise in our aging population but also an increase in the number of individuals with a range of disabilities– people don’t understand the fact that caregivers are the backbone of a long term care system in the U.S. Without the support of caregivers it would be very difficult for a large portion of older adults and people with disabilities to live successfully at home and in the community.

Because of the fact that caregivers are not recognized for the critical role they play, looking at that, there are some demographic trends for caregivers that often get overlooked.

One of those facts relates to the demographic changes in American families: with fewer families having children (and those that do having their children living all over the country), over time there will be fewer family caregivers available to help do the myriad of tasks that help to support older family members and people living with disabilities. Currently there are five caregivers for every person over the age of 80. By 2050 that number drops to one in three. Fewer than three caregivers means that there will be a heavier burden on those caregivers that remain. It also means that families will likely need to look for community and other supportive services to help augment their caregiving role.

Another trend is the amount of time and complexity of caregiving which is on the rise. We are looking at people who are 75+ who are spending more than 34 hours a week caregiving. These caregivers are not only helping their care recipients perform activities of daily living, but more and more they are also doing a lot of medical tasks that used to be the responsibility of medical professionals.

Another major issue that gets overlooked is the billion dollars of equivalent care that caregivers provide. There is no way to replace that – both on the human side or the financial side. Caregivers are the lynchpin in the long term care system.

You mentioned that a lot of the caregivers are now taking on some more advanced medical responsibilities. Are there particular skills that family caregivers should have and how important is the distinction between family and professional caregivers?

YC: I think it is important to have the flexibility to recognize both roles as important. We should advocate for an “other” category. Recently I have been focused on family caregivers because family caregivers in the community in which I am working family care givers are stepping up to help their loved ones but are not supported at the level that they should with information and support for them to care for themselves, and with policies that effectively support them to do the job they are willing to do. I think the two categories are important and there are variables that are very different for family caregivers and paid family caregivers. We need to pay attention to those. For now I know that we cannot tackle everything at once. NHCOA has been focusing on family caregivers – that is not to say that paid caregivers are not important – they absolutely are. What I would also say is that when we talk about family caregivers, we should also point out that there are communities (like LGBT) that a family caregiver is not necessarily blood related.

“We are in complete denial about our caregiving needs and often times people, as they age, don’t share the information with their families that would put their family members in the position to be a good caregiver or support their decision. On the other side of it, family caregivers can be equally in denial.” – Sandy Markwood

 

SM: A professional caregiver may fill in for the family caregiver at times to allow the family caregiver to work or do other necessary things. There is currently a shortage of professional caregivers which is likely to increase in the future. There is a need for more paid caregivers who are trained and supported to perform their important tasks. Family caregivers also need training as well since for many becoming a caregiver was something that just – happened. The level of caregiving then intensifies over time so it may start out as light tasks but ultimately evolve into a more complex and comprehensive level of caregiving that does involve that medical or more extensively medically-based tasks. There needs to be training on both sides, for paid caregivers and family caregivers. How that training is delivered and the culture of that training may need to be differentiated between a family caregiver who also needs support and a paid caregiver who needs to have the training, but also needs the support that what they are doing is valued and professional – even if It is in a different kind of way. We’ve explored whether there could be training that could be blended between paid and family caregivers. What we’ve heard is that really even if the basis of the training is the same, the needs of the individuals are different.

Do you think we need to think differently about caregivers, when it happens and planning for it?

SM: I think there needs to be planning, and I think that part of that is the realization that whether it is need for a caregiver because of aging or a short or long term disability, everyone is likely going to be there. We are in complete denial about our needs and communicating those needs to family members as we age. Often times people don’t share the information with their families that would put their family members in the position to be a good caregiver or support their decisions. On the other side of it, caregivers can be equally in denial. When this is this case, a medical crisis can lead to kneejerk responses rather than careful consideration of needs and desires of the person receiving care. Many individuals have had the experience where following an unexpected medical issue or hospital stay, family (and support staff or clinicians) suddenly decide that the parent has to move out of their house when really with a set plan of supports they could retain their independence, home, and their capacity or right for personal decision making. Part of doing this the right way is the acceptance and planning of aging and disability and ensuring that it is a part of the family discussion – not just a discussion that you have when someone has an episode or crisis but a conversation that needs to be made a part of the culture of the family. This includes understanding what the expectations are on the part of those in need of care, what the expectation is on the part of adult children, and making sure that those conversations are held and that plans are starting to be put in place so that everybody can be better prepared for a caring position (should it happen and ultimately it will).

“Why is it that families can take time off when they have a baby but why can’t we have time off when our mothers and fathers are ill? The idea of normalizing this conversation around caregiving in important.” – Yanira Cruz

 

YC: I think we need to as a society normalize this issue of caregiving – particularly when we talk about older adults. Society has a very negative idea about older adults that they are not sexy – they sell us all sorts of creams to make us look younger. They sell all this make up to look younger so there is this negative perception of aging in our society so we don’t want to talk about getting old or older adult issues. This is bowling over the caregivers who care for older adults. The fact that we have protections and laws that allow people to take care of themselves and their babies when they have babies exemplifies the need to normalize this whole conversation of caregiving. Why is it that families can take time off when they have a baby but why can’t we have time off when our mothers and fathers are ill? The idea of normalizing this conversation around caregiving in important.

Is there anything else we should consider?

SM: Because n4a runs the Elder Care Locator National Call Center for the U.S. Administration on Aging and Administration for Community Living, we hear every day about the needs of caregivers. One reoccurring question is, “Are any financial supports available for family caregivers?” This is because we know from the research how expensive it is for caregivers to provide care – not only how much out of pocket expense they pay but also recognizing that many caregivers often have to change their work structure to be able to be a caregiver. We need to have a major policy discussion regarding how we can financially support caregivers.

It is my hope that we will find ways to be able to provide that front end assistance or preventative services that caregivers so desperately need and deserve. One thing that I am excited about is that I believe from a public policy perspective that there is more interest in the issue of caregivers. The interest in this arena and the realization of the importance of caregivers is growing and that makes me optimistic that there will be supportive changes that will help caregivers, and in the long run, help care recipients.

YC: I wanted to say a word about long distance caregivers. What I mean by this is individuals who are coordinating care for a loved one from far away – from another state or city. That is an increasing reality that we are seeing and we need to think of those long distance caregivers in a way that is slightly different than those that are close to loved ones.

KB: Somehow we absolutely need to figure out how to be flexible with support for caregivers. At times it seems that there is no one set way to respond to a caregivers’ needs because the needs from day to day can change very quickly. We must figure out how to create a system that supports caregivers to give the best care even as everyone’s needs change and evolve. The system we create should offer care for caregivers when they need it – but allow them to not take those supports or use them at a later time when they feel they need it most. That type of flexibility is so necessary because it is so easy for caregivers to wear themselves out in making an assumption that they can handle it all. .

Kathy Brill, is a consultant with a demonstrated history of working in the individual and family services industry, Yanira Cruz is President and CEO of the National Hispanic Council on Aging (NHCOA), and Sandy Markwood is CEO, National Association of Area Agencies on Aging (n4a). All three experts are members of Anthem’s National Advisory Board (NAB) on Improving Health Care Services for Older Adults and People with Disabilities. For more information visit the website at www.mydfi.org.