Ep 5: What's the Role of a Care Partner?

[00:00:01] Laura Murphy: I was reluctant for three months to do anything, because then, of course, that made me have to admit that Andrew was sick.

[00:00:08] Dan Kendall: That's Laura. We heard her at the end of episode 4. She's a care partner for her husband Andrew. When Andrew was diagnosed with early onset Alzheimer's, both of their worlds were turned upside down. Her reaction is common for so many caregivers during the early stages of Alzheimer's.

Alzheimer's is a challenging diagnosis for everyone involved. That includes care partners and caregivers who are most often family members. Sometimes it's a spouse or a partner, sometimes the caregiver is an adult child. Still, other times, it may be a teenager who's in charge of care.

[00:00:41] Joel Ebuh: Alzheimer's is not just a disease that impacts the patients. Alzheimer's caregivers have worse health. The financial burden on the caregivers is staggering, as well.

[00:00:53] Dan Kendall: In this episode, we explore the realities of being an Alzheimer's caregiver, the importance of self-care, and where to turn for help and support. And just a note, in this podcast, we primarily use the term caregiver, but many people actually prefer the term care partner.

I'm Dan Kendall, and this is the Rethinking Alzheimer's Disease Podcast. The Rethinking Alzheimer's Disease Podcast was created by Mission Based Media with support from Eisai. This series is for educational purposes only, and is not a substitute for formal medical advice, diagnosis, or treatment. The opinions expressed are the individual views of the speakers themselves and do not necessarily represent those of any organizations. If you have questions about a medical condition, talk to your qualified healthcare provider. For our list of resources about Alzheimer's disease, please visit healthunmuted.com/resources.  All guests participated voluntarily and did not receive any form of compensation for their involvement.

[00:01:52] Russ Paulsen: Part of the problem with Alzheimer's and dementia in general is that there's so much stigma attached.

[00:01:58] Dan Kendall: That’s Russ Paulsen. He’s the Chief Operating Officer at UsAgainstAlzheimer’s.

[00:02:03] Russ Paulsen: There could be shame on the part of the caregiver as well as the person who has the diagnosis. There shouldn't be. It's not anyone's fault. No one did anything wrong to get Alzheimer's disease.

[00:02:16] Dan Kendall: It is common for caregivers to want to protect their loved ones from the struggles and possible outside judgement of the disease. It is a big job, caring for someone with Alzheimer’s, and caregivers need support too. The role of a caregiver for someone with Alzheimer’s has multiple parts. Here’s Katie McDonough from the Alzheimer’s Association.

[00:02:35] Katie McDonough: You very often are the emotional support. You're the one steadying the ship. You hear the diagnosis, you have to not only navigate your own emotion, you're helping the person living with a diagnosis navigate that. You're also navigating with the rest of the family or community of friends around you.

[00:02:58] Jason Resendez: I think at the earliest stages, it's all about navigating the care system, and navigating a new reality, in partnership with their loved ones.

[00:03:09] Dan Kendall: That’s Jason Resendez, the president and CEO of the National Alliance for Caregiving. In addition to immediate concerns, there are also a lot of longer-term things to consider.

[00:03:20] Jason Resendez: What will life look like in the future? How do I prepare for that future? That uncertainty often seeds emotional strain and stress. And so that's a big challenge for caregivers. At the earliest stages, it's about understanding the diagnosis. Making sure it's an accurate diagnosis, which is a big issue for many people navigating Alzheimer's given how complex Alzheimer's is. And then also navigating what treatment and care options will be.

[00:03:51] Dan Kendall: Someone living with the early stages of Alzheimer's may be mobile and independent, so there's still time for everyone to learn and make plans. There may be certain changes or activities that would be better put in place early in the disease.

[00:04:04] Jason Resendez: What we see in our data is that more than half of family caregivers really play a role as an advocate with their care partner's health care professional, and also with things like insurance agencies and government support service programs. 

[00:04:23] Dan Kendall: A caregiver helps navigate and get access to treatment, pay for treatment, and stay on that treatment. A caregiver may also need to keep working at a job to maintain income and health insurance benefits. 

[00:04:35] Jason Resendez: Over 40 percent of family caregivers, particularly someone caring for someone living with a complex disease like Alzheimer's, are taking on multiple medical and nursing tasks over time, often without any training or support from a healthcare professional.

So that training is really essential, and that's where the local chapter of the Alzheimer's Association or local Alzheimer's organizations in your community are gonna be really essential to helping navigate what that training looks like.

In the case of the latest therapeutics for Alzheimer's, those are infusion based. So an individual is needing to make regular visits to an infusion center and needing to get regular checkups with the provider and things like PET scans, for example. And so a family caregiver is really integral to navigating and coordinating all of that. 

It comes down to working to find a new normal. And the role of the caregiver is really essential in that process.

[00:05:36] Brandon Burke: You start thinking about what does this now mean for me personally? What does that mean for my life? What does it mean for my future?

[00:05:44] Dan Kendall: Brandon’s dad was diagnosed with Alzheimer’s when he was just 59. Meanwhile, Brandon was only 34. 

[00:05:51] Brandon Burke: I had endless questions after diagnosis. What do we do next? Are there other specialists? Are there other people that need to be involved in this process other than just the neurologist and his PCP? Who do we talk to in the state or what organizations are available?

[00:06:10] Dan Kendall: Brandon figured out how to live this new life and even wrote a book for other young people who find themselves having to care for a parent. There are also wonderful nonprofits such as Lorenzo's House and Hilarity for Charity that work to support young caregivers. 

Changes in judgement and behavior can be a symptom of the disease. Someone with Alzheimer's may not recognize something as a problem, so attempts to help may be met with resistance. And there's one conversation in particular that many adult children dread having with their parents: whether it's time to take away the car keys.

[00:06:47] Russ Paulsen: You want to do that only when there's really a reason to do that. Keeping the relationship going is really, really important because that person who's living through the diagnosis is going to need all the support that they can get. So we really urge people not to shatter that with some preconceived notion of what needs to happen. 

[00:07:09] Dan Kendall: Brandon reluctantly took his dad’s car keys away from him. He was concerned about what would happen if his father was pulled over and got confused.

[00:07:17] Brandon Burke: I am black. My father is black. There's also that point of contention with police and how they treat people of color. And so, if he gets upset, will they understand?  How will they react to that? 

[00:07:29] Dan Kendall: In Andrew’s case, he gladly gave up the keys.

[00:07:33] Andrew Hollinshead: It's up to each and everybody's discretion, but for me, it's a no-brainer. I just need to drive Ubers and all those types of things.

[00:07:42] Dan Kendall: But Andrew’s case isn’t common. Taking away the keys can feel like you’re taking away someone's freedom. 

[00:07:48] Russ Paulsen: If it becomes apparent that there's a real serious problem, then it's time to team up with the doctor and figure out what's going on.

[00:07:59] Dan Kendall: You may have heard the expression that it’s important to put on your own oxygen mask before you help others around you. This is true on airplanes, and it’s also true in life. Caregivers need to be supported, because helping someone who has Alzheimer’s is a lot of work.

[00:08:13] Jason Resendez: We've heard so many stories of individuals who have talked about it. In the earliest stages, when an initial diagnosis is made, there's often an outpouring of support and well wishes and folks wanting to be engaged, but after that initial period, folks don't know what to say, what to do. And so, oftentimes, they don't reach out. And so that can contribute to isolation.

[00:08:36] Dan Kendall: How good are you at asking for what you truly need? Meet Dr. Mary Mittelman.

[00:08:43] Mary Mittelman: I'm Mary Mittelman. I'm a psychiatric epidemiologist and research professor at NYU Langone Health in the Department of Psychiatry.

[00:08:51] Dan Kendall: In Dr. Mittelman’s studies, she examined a variety of lifestyle factors and the effect they had on caregivers.

[00:08:58] Mary Mittelman : Until we find a cure, or a way of at least reversing the course of Alzheimer's disease rather than only slowing the course, it is essential that people have access to these kinds of lifestyle interventions that can make all the difference for them and for their family members.

[00:09:19] Dan Kendall: She discovered a key factor that made a major difference in the lives of care partners of people with Alzheimer’s.

[00:09:26] Mary Mittelman: So, we think that the family counseling  in particular  was the magic ingredient that made it possible for the caregivers to cope with less stress, less depression, less impact on their physical health, and keep the person at home with them longer.

[00:09:44] Dan Kendall: Counseling is a great resource for caregivers, including Laura.

[00:09:48] Laura Murphy: I did get some counseling support, and I contacted a therapist to help me straighten my thought process. And our retirement that we envisioned for ourselves was going to change and so how to put that in perspective and live the best life that we can.

[00:10:07] Dan Kendall: It can also be very helpful to find and connect with other caregivers, people who truly understand what you’re going through and can help you assess your situation.

[00:10:16] Brandon Burke: Having a support system is the best thing that you can do for yourself. When you're caring for someone else who needs so much, it gives you people to talk to, it gives you empathy for what it is that you're going through. 

[00:10:32] Laura Murphy: I reached out to the Alzheimer's Association. I called them one Sunday night and I'm just completely paralyzed, and I don't know what to do and I don't know where to turn. What they did is they sat on the phone with me for a couple hours and we devised a plan together. And they took all the notes, and they emailed them to me. It's kind of like a game of the things that I need to be doing and thinking about and where I can get support and help.

[00:11:00] Dan Kendall: Organizations like the Alzheimer’s Association,  UsAgainstAlzheimer’s, National Alliance for Caregiving and Black Health Matters have resources that can help. Another organization, particularly for younger caregivers, is Hilarity for Charity, founded by actors Seth Rogen and Lauren Miller Rogen. What they do is pretty cool. They bring laughs and light to the Alzheimer’s space while accelerating progress in Alzheimer’s care, prevention, and support. Many of these organizations put together or partner with support groups - which can be a huge help. Support groups can take place live and in-person, but they can also meet online and through social media.

[00:11:37] Laura Murphy: I have a support group. It's online.

[00:11:40] Dan Kendall: Laura's part of a Facebook group with about 1,400 female caregivers from around the world who share what they've learned at every stage of being a caregiver.

[00:11:49] Laura Murphy: Social Security, Medicare. Do they have to declare bankruptcy, do they have to divorce their spouse so they can financially get them in nursing care?

[00:11:59] Dan Kendall: Each person with Alzheimer’s has unique needs, and the same is true of their care partners. Making time to enjoy activities and hobbies is an important part of taking care of yourself. Your needs still matter and taking care of them is nothing to feel guilty about! This is sometimes referred to as ‘self-care’, but it doesn’t mean you have to do things by yourself. For Brandon, his self-care involves remaining present with his dad, even if his dad may not be present with him.

[00:12:26] Brandon Burke: You get to this point where you're kind of mourning someone's eventual passing way before it even actually physically happens, right? Which is tough because you realize, oh, I can't talk to him about my job, about what's going on in my life. I can't ask him for advice about relationships, but what I can do is be here and we can have a good time with the things that we are doing.

[00:12:55] Laura Murphy: We go to concerts, we go to the movies, and we try to do things that are relaxing and peaceful together. The self-care is something that we do as a couple.

[00:13:08] Dan Kendall: Other ideas for self-care might include getting exercise and giving yourself breaks, or trying new experiences.

[00:13:16] Laura Murphy: You have to live your life and you have to start putting your bucket list out there and you have to start experiencing things. I wish that I had come to that reality sooner. We're still alive, we're still here, we're still functioning, and we still have dreams and we still have things that we want to experience together, and we're doing that.

[00:13:34] Dan Kendall: Remember, there are dozens of organizations and resources available that you can access at no charge, and they're available in person or online around the world. Be sure to seek out the support that you need along your caregiver journey. 

On the next episode of the Rethinking Alzheimer’s Disease Podcast: What does the future hold for Alzheimer’s diagnosis and treatment?

[00:13:57] Dr. Thomas Obisesan: The future has never been more exciting.

[00:14:03] Doreen Monks: The best way to treat something is to catch it before it actually happens. And that would be a phenomenal thing.

[00:14:08] Dan Kendall: This is the Rethinking Alzheimer's Disease Podcast, hosted by me, Dan Kendall. This show is part of the Health UNMUTED audio library by Mission Based Media and was created with support from Eisai. To listen and learn more, visit healthunmuted.com/resources and follow our show on your favorite podcast player.