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Melanie Cole, MS (Host):   Welcome. This is ChristianaCare’s podcast series. I'm Melanie Cole and today we’re talking about meeting the palliative care needs of dementia patients in our own community. Joining me is Dr. Linsey O’Donnell. She’s the clinical lead of community based supportive and palliative care at ChristianaCare. Dr. O’Donnell, it’s a pleasure to have you join us today. Let’s start by separating out right now for listeners the difference between hospice care and palliative care so that then we can move on to how this can help people that are suffering from one form or another of dementia.

Linsey O’Donnell, DO (Guest):   Yes, absolutely. Thanks for speaking with me today. It’s a really important topic. Palliative care and hospice often get lumped together in the same sentence and it’s something that I'm going to push back on because they are very different things. So let me start with defining palliative care. So palliative care is specialized medical care for people with serious illness. It focuses on providing patients with relief from symptoms, pain, and stress of serious illness whatever the diagnosis, all forms of dementia included. Really the goal with palliative care is to focus on the improvement of quality of life for the patient and the family. The group that provides palliative care is a team—team of doctors, nurses, specialists. They work together to support to the patient. They work with a patient’s existing doctors and providers to really be that extra layer of support that helps people have the best life possible.

Now here’s where the difference really resounds between palliative care and hospice. That is that palliative care is appropriate at any age or any stage in a serious illness. It can be provided along with curative treatment. That’s really important for individuals to know because in palliative care we can walk with people throughout the course of their illness providing them with suggestions, symptom management, help with advanced care planning which looks different at different stages of illness and certainly so in different stages of dementia.

Hospice programs is actually a Medicare benefit. Hospice services are absolutely wonderful and essential in the care of our patients, but they are a little bit different. They’re a program, as I mentioned, that is provided by Medicare that provides an interdisciplinary team to go out and provide end of life care. On average the patient needs to have a shortened life span of about six months or less if the disease takes it’s usual course. Now hospice isn’t going to say, “Hey, you're still here. It’s been more than six years. We’re going to have to discharge you.” If people are still in declining and still in the phase where they want to focus on comfort and quality of life over life prolonging care, hospice can still be appropriate. With that being said, I would say that palliative care can start along the continuum. Hospice care that’s provided in the last six months of life.

Host:   Well thank you for that excellent explanation, Dr. O’Donnell. It really clears it up. So let’s talk about dementia then. How is that a life limiting illness? Tell us how it’s assessed. We all forget our keys. We all sometimes go, “Oh Jesus. What did I come in this room for?” We all have those moments. However, there are certain red flags that can signal that it’s something more serious. Dementia and Alzheimer’s are another thing listeners get confused about. So first tell us how these are life limiting illnesses and then kind of separate them out for us.

Dr. O’Donnell:   So dementia, really the definition of dementia helps us in this aim. Dementia is memory loss that impairs functioning. So you know what? We all forget from time to time. That’s normal. When it starts to really impact our ability to function, to live our life, that’s when we start worrying and start looking at the causes. Sometimes dementia’s a little bit of a catch all term. It’s memory loss that impairs functioning. We do a medical workup sometimes. Sometimes causes are found for this that are reversible or improvable. Other types of more progressive. Things like Alzheimer’s dementia, frontal temporal dementia, Lewy body dementia. I'm sure that you're speaking with some of our lovely colleagues here at Christiana Swank Center, but a lot of adults in the U.S. have dementia. Half of adults over the age of 85 have dementia. One in three adults can actually die with a diagnosis of dementia. So it’s common. It’s something we definitely need to understand.

Now the reason that I call it a life limiting illness is a lot of times people think dementia, problem with my memory. But when you see the whole spectrum of dementia as a disease, the average life expectancy after the diagnosis of dementia is six to eight years. People with dementia pass away and die of a multitude of things. Along with dementia, people can develop eating problems. They're more prone to things like pneumonias. That is life limiting. Also I think more importantly dementia’s life changing and I think that palliative care can really be there to support people as their lives change because despite the fact that people are given this very serious diagnosis, it doesn’t mean that we can't live well at all the different stages of the illness. That’s something that we absolutely help to support.

Host:   You hit the main point right there because people hear palliative and hospice and they think it’s cancer care. They think palliative might only be used in cancer but for dementia or Alzheimer’s patients. There is so much that you can do. So now tell us what is it that you can do? What types of palliative care are available when somebody has dementia because being a caregiver is in itself quite exhausting? So anything that can be done to help those patients and to help the caregivers is certainly welcome. So tell us what kinds of palliative care you offer.

Dr. O’Donnell:   Sure. I have to say that palliative care supports patients and families. We really look to both individuals in that group. Patients, families, caregivers. The people who are important to our patients can look a lot of different ways and can be a lot of different people, but we find out who they are so that we can support them just as much as we support our patients. In terms of palliative care interventions, I like to kind of take the view that there are different things that tend to be offered at different stages. So earlier in an early stage of dementia whereas you mentioned before somebody might be forgetting their keys, they're forgetful, they're losing track of time. They're getting lost in familiar places. What does palliative care do there? Well, we take a big role using our interdisciplinary team to educate patients and families on the progress and the stages of dementia and starting to define what acceptable quality of life is for the patient. They're still very able to talk with us about these things at this stage and to be able to point out things that are very important to them. Then we can help focus the patient and family on ways to achieve those goals.

Some things that are important earlier on in dementia before you memory becomes too impaired is to find out who you would want to make out decisions for you and appoint that person as a surrogate decision maker. Tell them what your wishes are and maybe start writing that down and putting it in writing. That’s early. The middle stages of dementia—as middle progresses into the middle stage that memory loss, that confusion, that agitation can be more prominent. Some of the symptoms can kind of ramp up. So people can get lost at home, start having trouble communicating. Need help with those activities of daily living like getting cleaned up or getting dressed. In that space, palliative care really encourages completion of important tasks like making sure that that advanced directive is done and set up and supporting the family to prepare for care and what that looks like in this new stage. If they're having some caregiver burden or some stress, talking to them about taking care of themselves as well and really helping people have a care plan in place for changes in the disease.

Then finally for the later stages of dementia, that’s where the patient becomes fully dependent. They often lose the ability to walk, sit up, swallow, speak. These things don’t always fall on a linear course. Every person is different, but we hear things from caregivers in this stage saying, “I wish she would eat. I don’t know if she recognizes me anymore.” These folks are needing help with pretty much all they're self-care. They're maybe really not walking. Sometimes people have aggression or behavioral changes. At this point we want to help people plan for the later stages of the disease. That might include a peaceful death that would meet the patient’s wishes. It might be completing important tasks like that advanced directive again or saying goodbye to loved ones. At that stage, we in palliative care recommend the hospice benefit for the wonderful support they provide if the prognosis is less than six months. We can also help people at that juncture fill out some advanced care planning documents. In Delaware we have something called a DMOST which really be an actionable physician or order so that patients can receive the care that they want at the end of life and not the care that they don’t want.

Host:   As someone who has many older relatives and has done a lot of segments and shows on these particular topics, Dr. O’Donnell I have to say that your profession is lovely. It is absolutely something that is strictly involved in the care and dignity and comfort of the patient. When it comes to dementia patients and the frustration that comes along with those caregivers, tell us what you have seen when you do offer this type of care? Whether it is someone to come in, a little respite care, or medications to help if a dementia patient has unidentifiable pains or all of these different things. What have you seen in your practice in the ability for patients to receive this type of care?

Dr. O’Donnell:   I've seen so many patients with dementia and the one thing that always strikes me is every patient and family is different. Everybody has different needs. Sometimes you just have to ask. So we go in with an open mind and we’re backed up by our colleagues in social work. So if you need that respite care, we can our social worker talk to you about where do you get that? How do we do that? What are your insurance options? The physician or the nurse practitioner or the PA can talk about what symptoms are bothering you in terms of pain? What sort of medications, non-medications can we use to treat these things? Sometimes it’s just being there to be a sounding board for our patients and families. I make it always a point to make sure that the patient and family have a good understanding of their disease state, their diagnosis, and their prognosis. I think that it’s really important to always asses those caregiver needs at each visit. Checking in and turning to that caregiver and saying how are you doing? Some of those people are surprised when I ask them that in a visit, but it’s so important because you really are a dead—a caregiver and a patient—throughout this disease process.

We also sometimes help guide people in making tough choices. If patients ask me, “Should I take this medicine? It has this risk. Should I do this treatment? It has that risk. Should I still get that colonoscopy? Is that even going to help me at this point?” Those are the things we need to listen to with an open ear and help guide people through. It’s a challenging illness. I think that whatever we can do to be patient centered, to restore the dignity and maintain the dignity of the patient and support the caregiver in the process is what we need to do.

Host:   So as we wrap up, best advice for patients and caregivers, family members that love them on dealing with somebody and helping your loved one when they are suffering from dementia or Alzheimer’s and the help that palliative care and hospice can give in this case.

Dr. O’Donnell:   I think that the important thing that I always tell family members is this is hard. I talk them through what the process could look like for their loved one and make sure that they're ready to hear that information because it can be a hard thing to hear, but it’s important for them to know. That’s one portion and something that I do in palliative care that I think’s very important. The other pearl that I give patients and family members is that this is your loved one. Some of these behaviors are the disease progressing, the disease talking. This is still your loved one. Whatever we can do to love and honor and respect them is important. When I go out and see a dementia patient for the first time, I talk to them simply if they're at a stage when they are at a stage where they could be confused by complex discussions. I always talk to them. I tell family members even if you're not sure how much you're hearing them, sing a song they always enjoyed. Reminisce. That is absolutely important.

The other pearl for this stage in life, I believe, is that the earliest stages that dementia is diagnosed while that loved one can still participate in advanced care planning, it’s essential to start working on getting things together as this disease progresses. While you're still able to tell us, let us know what's important to you in your care, what you goals are, what you want, what you don’t want, what you don’t want, what would be too much for you, who you would want to make those decisions for you. I think that’s incredibly important. As mentioned, palliative care can help with all of this. I really encourage people to seek out palliative care. There’s a great website online called getpalliativecare.org that directs you to local palliative care organizations. We have a great group that actually at our health system that goes across all the settings from inpatient to the cancer center to the community even to the in home setting. So certainly utilize those resources. Then don’t forget that when people reach a prognosis that hospice can get involved, consider getting them involved. It’s better to get them involved earlier and reap all the great benefits of hospice including great in home nursing, additional in home help. So don’t wait on that if it’s consistent with the patient’s goals. Work with your palliative care specialist, your primary care doctor, your memory specialist to find the right time to bring that benefit to bear.

Host:   Absolutely great advice. So well put. Thank you so much, Dr. O’Donnell, for joining us today and sharing your incredible passionate expertise. Thank you again and that wraps up this episode of ChristianaCare Swank Memory podcast series. To learn more about programs and services or for an oppointment at the Swank Center for memory care and geriatrics, Delaware's first and most comprehensive outpatient program dedicated to the assessment and assistance of older adults and their caregivers coping with dementia and other neuro-cognitive disorders, please call 302-320-2620 to schedule an evaluation or you can visit  christianacare.org/swankmemorycare to get connected with one of our providers. Please remember to subscribe, rate, and review this podcast and all the other ChristianaCare Swank Memory Care podcasts. If you found this podcast informative, please share on your social channels. I'm Melanie Cole.