This interview was first done in September of 2019. While much of what was said remains the same, we have updated the interview to reflect on the changes brought on by COVID-19. Those items are boldfaced. Even if you have read this article before we urge you to read again. This message is more important than ever.
Q&A with Audrey Swanson on the RSS Adult Day Program for Memory Loss
To learn more call 718.884.5900 or go to rssny.org.
You can also contact Audrey at email@example.com
How did you get involved working with older adults with memory loss?
What we do here is very personal to me. About 15 years ago, my grandfather was diagnosed with Parkinson's disease. He lived far from me so it was tough. Then he suffered a fall and needed surgery. And, he never really recovered after that. He was in residential care from that point forward in his life. This went on for several years until he died at 84. The Parkinson's created several dementia-related symptoms that Parkinson's can create, particularly difficulty in articulating language and using language. And, all the mobility issues. The care that he got, was just simply not meeting his secondary needs that are as important as medical needs. Things like social connection needs, like a sense of purpose and belonging. Those psychological needs were largely absent. A similar situation happened with my grandmother when she had a stroke, and also ended up in residential care and suffered similarly in terms of the lack of opportunities to really connect with other people.
I felt I could make an impact as a professional in this way. So I went back to school to get a Masters in Social Work, moved to New York. I came to RSS five years ago to have an impact in terms of improving the well being of people even if they have an illness, that has taken much away from them.
What sets the Adult Day program apart from other programs? What does early memory loss mean?
Before we talk about that, it’s important to know that there are some general needs that everyone has, at any point in their life. As we age later in life, maybe are leaving the workforce, or you’ve lost friends, people still really need a sense of connection to other people. We all need a feeling that you belong to a social group. You want to be with people who have common interests. People need a sense of purpose. It's often something that comes from work or from family. You need things that can engage you in many ways - intellectually, socially physically (like exercise). You need a sense of connection to the greater community and to your neighborhood. But when it comes to dementia, you have your limitations that start to make it difficult to meet these needs.
With the onset of COVID-19, those with memory-loss are more homebound than ever before. The issues of isolation have only become more profound since you are staying home so much. More of those with dementia are now also suffering from depression. Connection to the outside world is even more important than ever before. You need not only connections with close family members but the wider community as well. Developing friendships with others that they can trust remains critical. This is where RSS and programs like this play a critical part for those suffering from dementia.
What is dementia?
Dementia is a blanket term that relates to a constellation of symptoms that can be connected to different diseases. It's more of a general term. Then there are specific diagnoses like Alzheimer's disease or Lewy body dementia (this was discussed often after Robin Williams committed suicide). Dementia really means limitations in four ways. 1) Difficulty with language, 2) Difficulty with physical movement, 3) Difficulty with knowing how to do something and 4) Difficulty with perception. So, these four things can make it difficult, if not impossible, without the right kind of support and help to let you be connected to other people and have a sense of purpose and meaningful activity.
When you're suffering from something that creates dementia, you're often left isolated, you're often left bored, and honestly, you're often left depressed. And, if you have dementia, there may be awareness that you are isolated, that you're not doing much, that your life is not the same as it used to be. There is often that insight, especially in earlier stages that it's not like it was before. That's where programs like our Adult Day program bring enormous value.
RSS Adult Day can't cure dementia, or make the primary symptoms just go away. But there is a lot we can do. We can reduce the isolation, we can reduce the boredom, we can help the depression.
How do you make life better for those with memory loss?
Besides group activities, we work one-on-one with our participants, whatever their stage of memory loss. We do specific activities designed to get people involved. It might be music or art or exercise. Sometimes we just sit around and talk about life and our experiences. Our online program is extremely tailored to the individual and that families needs.
The real purpose of all these activities is to offer something that wouldn't otherwise be possible if a person were by themselves at home, maybe just with their caregiver or their family. What separates the RSS program is that we have made a specific focus on working with people with dementia. Many other adult day programs try to be many things for people. They work not only with people who have dementia. They include people who have major mental illness; with people who have developmental difficulties; major physical illnesses. These are very different concerns. It makes it very difficult to create a close-knit group when you have people with wildly different needs.
We also work very closely with the family from the very beginning. We really focus on dementia, what support the family needs. We try very hard to understand what their concerns and worries are.
How long do people stay in the program?
This is one of my favorite things to talk about. And I'm happy to share that we have people who have been attending the program for more than five years. Many people will attend the program for as long as possible, given their, their physical stamina should be able to come in there, ability to an interest in joining the program activities, many families will have their loved one come even up to the very month in which they pass away.
Is there a specific age range that the RSS Adult Day program covers?
We do need to work with families who have a loved one who is at least 60 years old, due to our funding limitation. But we work with caregivers of any age , work with spouses, children, or grandchildren who are caring for a parent or grandparent or brothers or sisters who might be caring for another sibling. We see people from all walks of life, different cultural backgrounds, many languages are spoken here.
Do you have any suggestions on how family members, friends, and caregivers can talk to and help those with dementia - at an early stage or later on?
The most important thing is to have a sense of compassion, empathy for their situation. The most important thing is to see a person as an individual, and not as the diagnosis they have, I think. It can be very easy to define a person in terms of their limitations, or the problems that they have, while essentially missing all of their personality, all of their strengths, everything that makes them who they are. Treat them like a human being with dignity, respect, the way you would treat anyone. Treat them like an adult, as a good friend, as anyone in your family. Just don’t define them in terms of their problem, define them in terms of their humanity.
What are the challenges for caregivers? How does the RSS Adult Day program try to help?
The impact of COVID-19 has been huge for caregivers. It has really emphasized that sense of isolation and the feeling that you are doing everything on your own. The usual ways you might have seemed help or taken a break have been taken away because of COVID-19. You may have lost or had to change your homecare arrangements or your homecare has become less reliable. Caregivers may feel a real loss of options and a feeling like everything is now on their shoulders. At the same time, they may also be balancing working from home and children that may be schooling from home.
That is why help and resources are so needed. RSS is here to make sure you are not alone in managing all this. We are a safe space where you can talk about feelings that may be difficult to express - fear of getting COVID, how long the pandemic will go on, how to financially manage. We are here to help.
Adult Day is as much for caregivers as it is for the program members. Caregiving can be tremendously isolating, tremendously stressful, and it can often feel like a person is doing it all, by themselves. When we connect with a family for the first time, it might be the first professional, whom they've ever really shared about what’s going on, what they are experiencing. Things like restless nights and anxiety. That feeling of being overwhelmed by the decisions that need to be made. The systems they have to deal with don’t make it any easier - health insurance, Medicare/Medicaid, etc. How does it all work? Since I’m a social worker myself, I act as that link I try to help them make sense of it all - bring order to the chaos.
We also have support groups for caregivers. One is for spouses and one is for children and grandchildren who are caring for a parent or grandparent with dementia. Support groups offer that safe space to share the emotional aspects of caregiving that often don't really have a chance to come out any other way.
We are also connected to the community in a larger way through our relationships with CaringKind, the Alzheimer's Foundation of America, the Parkinson's Disease Foundation, the Lewy Body Dementia Association. These are only some of the professional organizations that we work with to support caregivers.
What do you think are the biggest stresses that caregivers have?
It’s not having enough help. working with dementia often means another person has to be involved, especially if there are concerns about safety. That help has to come from somewhere. And there are only so many hours in a day, there's only so much energy a person has to devote. Unfortunately, dementia can mean these things can happen any day or night. And, unfortunately, the reality of our healthcare system is such that we don't provide for this kind of long term care. You have to make yourself poor to get Medicaid. But that's not a realistic option for many. So they're piecing together what homecare they can afford with programs like RSS Adult Day, and other family members, or friends or neighbors or anything where they're living with the loved one. Basically, they’re doing a lot of it themselves, unpaid. And often unrecognized.
It's extremely difficult. It can feel very hopeless. It's just not enough. It’s just not enough help. And I think that feeling of despair is something that we're here to help alleviate that for caregivers. We offer that safe space and work with their individual situations to try to make a difference.