End-of-Life Care in Alzheimer’s & Dementia | What Families and Caregivers Need to Know

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Hi everybody, welcome back to a new episode of the Truth, Lies Alzheimer's Show, and I'm Lisa Skinner, your host. Today I want to talk about a little bit of a sensitive topic, but I think it's something that needs to be brought out in the open, and it is end-of-life caregiving, and it's going to include communication tips for people living with Alzheimer's disease and dementia. As we all know, caring for someone with Alzheimer's disease or other forms of dementia at the end of life presents very unique physical, emotional, and ethical challenges. We're going to talk about evidence-informed guidance for caregivers, family members, and professional care teams. I'm going to cover understanding the trajectory and common end-of-life needs in dementia. I'm also going to cover practical caregiving strategies that will include symptom management, daily living, safety, and of course, comfort. Also communication techniques that are tailored to the different stages of dementia, decision-making, advanced care planning, and preferred ultimate goals of care, the emotional, spiritual, and caregiver self-care considerations, and coordination with healthcare professionals and available resources. We all know that dementia is a progressive terminal illness, but the decline spans months to years and may present with a lot of fluctuating symptoms. Some of the more common end-of-life themes are increased frailty, weight loss, and significant decrease in appetite. A reduced ability for a person to communicate. They have difficulty swallowing a lot of times, and we have to be mindful of swallow safety.

Risks.

They also have an increased susceptibility to infections like pneumonia and dehydration. Pain and discomfort may be hard to detect, and behavioral changes can obviously signal distress. There's typically an emergence of withdrawal, sleep disturbances, and and decreased activity. Therefore, the concept of comfort-focused care emphasizes symptom relief, dignity, and quality of life rather than curative treatments. Some of the key goals of end-of-life care and dementia are relief from suffering, from pain, discomfort, anxiety, and agitation. The maintenance of dignity and comfort, such as positioning, grooming, and continuing with familiar routines. The facilitation of meaningful connection and communication. Safe management of swallowing and nutrition preferences. Respect for a person's known values, previously expressed wishes, and cultural beliefs. Also support for family and caregivers to help reduce burdens and burnout. Now some of the care settings for care teams that will experience include home settings, hospice, nursing facilities, assisted living, or specialized dementia care neighborhoods. And the core care team typically consists of primary care physicians or geriatricians, palliative or hospice care specialists for end-of-life care, nursing staff and home health aides, social workers, chaplains and bereavement counselors, pharmacists for medication review, family caregiver and friends. So some of the important tools that you'll want to consider having already in place are an advanced directive or a physician's order for life-sustaining treatment. It's also referred to as a POLST document, or you also want to have a do not resuscitate order in place and a do not hospitalize, uh, preference where applicable. Those are available. Comfort-focused care plans and symptom management protocols. Uh, symptom management is going to include their pain and comfort levels. So look for nonverbal cues, facial grimacing, restlessness, being guarded, wrinkling of their face, or vocalizations. Use age and condition appropriate pain assessment tools if possible. One of the well-known ones is called the ABI Pain Scale. And the caregivers can actually use it to assess their pain levels on a day-to-day or even, you know, several times a day basis. You want to make sure that their analgesics are regularly reassessed under medical supervision and to avoid undertreating pain. In terms of their breathing and airway, probably the best approach is to elevate the head of the bed to add drainage and ensure good airway clearance. A lot of people use those pillows behind the person that puts them in a 45-degree angle, and this helps minimize aspiration danger. Humidified air and gentle suctioning, if advised by professionals. Now, swallowing and nutrition can be very challenging at end of life. There's something called dysphagia. And it's very common. So, if they are showing that, then it's better to use soft textures or pureed foods as advised. Dysphagia is difficulty swallowing. Offer small frequent meals, maintain oral hydration if swallowing is safe, but be mindful of choking risks. Consider feeding aids and supervision during meals always at end of life. Now, they have skin and mobility challenges at end of life. So, um, some of the recommendations would be to reposition your charge every 1 to 2 hours to prevent pressure injuries and bedsores. Use barrier creams, moisture, and gentle massage as they're able to tolerate them. Always maintain comfortable, well-supported positions. Consider specialty mattresses or cushions like the one that positions them in a 45-degree angle that I mentioned. It's not uncommon for them to have sleep challenges and a tendency to become agitated very easily. So what can help with that is to establish a predictable routine and limit their nighttime awakenings if possible. Use gentle orientation cues such as soothing music or familiar items. These things can really help reduce agitation. Avoid excessive daytime lethargy and balance naps with an activity. In terms of infections and medical complications, uh, regularly monitor for fever, confusion, or sudden changes and seek medical advice promptly. The use of antibiotics or treatments may be discussed in the context of comfort-focused goals with your person's physician. Now, in terms of providing daily living and comfort at end of life would be again to implement and continue personal routines and, um, what, what that will look like is to preserve familiar routines such as bathing, dressing, and other rituals that are familiar to them. And this will also help to maintain their dignity during this time. Use preferred clothing and routines that reduce anxiety. Ensure that their environment is calm and familiar to them. Uh, always reduce as much clutter as possible, and it's important to ensure that their lighting is adequate. Safety measures include handrails and non-slip mats and clear pathways, especially if they're still ambulatory. For hygiene and grooming, Continue their oral care, their skin care, especially frequently, because the skin of people in their older years thins and becomes frail and easy to tear. And then, of course, gentle grooming to help maintain their dignity. Use assistive devices as needed. Keep devices close and keep caregiver-to-patient ratio sufficient for their continued safety. In terms of odor and cleansing— cleanliness, this can become a huge challenge at end of life. So regular, gentle hygiene is pretty much essential. And manage incontinence issues discreetly with appropriate products. Just one side note I want to add is this is not what we're— what I'm sharing with you today will not apply to every single person that is being cared for end of life because people are still at different stages even when they fall under end-of-life care. Some are more alert, are more mobile. Some are, you know, not mobile at all, they're bedridden. Some are non-communicative, they sleep a lot. So you basically have to adapt these things to your individual person. Person. In terms of medication management, you want to review all medications with their clinician to focus on comfort and symptom relief. Some disease-modifying medications may be stopped or reduced by the physician, and many end-of-life regimens do focus on symptom control. Monitor for drug interactions, adverse effects, and cumulative sedation. Simplify their regimen. Use easy-to-swallow forms. Align dosing with their daily routines. End-of-life decisions and dignified dying. So, in terms of advanced care planning, And we've talked about this many times before. Have those conversations early on when you are first diagnosed, when they're first diagnosed, or first start showing signs of memory impairment. You want to talk to them while they're still capable of doing so about values, about their goals, and about acceptance of potential outcomes. I've had so many family members over the decades tell me that they did not have these conversations when their parent, let's say, was still of a healthy mind and sound mind, and they really regretted it because they then felt a lot of pressure and oftentimes a lot of guilt over having to make decisions that they weren't sure were the decisions that their parent would have shared with them. You can also document wishes, their wishes, via advanced directives or those POLST forms that I mentioned. Ensure healthcare proxies and durable power of attorney are already in place and their do not hospitalize preferences. Now, many families do prefer comfort-focused care at home or in a familiar setting. Most of the either assisted living, board and care homes, and/or memory care neighborhoods within the assisted living facilities do are allowed to have hospice come in for end-of-life care. So it's important to clarify symptoms that would necessitate hospital transfer, 'cause there are some things that are not allowed under hospice care that would need a hospital transfer or long-term care transfer. You wanna make sure that the DNR, do not resuscitate, decisions are in place. So discuss those preferences in advance while they're still of sound mind, not only with your loved ones but with their clinicians, and make sure that they're aligned with the loved one's wishes. Withholding or withdrawing treatment— make sure that you include that in the conversation include discussions on would they want tube feeding, would they want IV hydration, would they want antibiotics given if they develop aspiration pneumonia, for example, or a urinary tract infection, for example, and of course any invasive procedures. That can make a difference whether they can be under hospice care or long-term care or hospitalization. Now recognize that some interventions may offer limited benefit or cause distress at the end of life. Now I'm going to dive into communication strategies across the three different dementia stages. I know there's a 7-stage model, but this is the 3-stage model. So in early to mid-stage, validate and acknowledge. You could say something like, "I hear you, and I can see that you're very upset right now." But keep the sentences simple and concrete. Here's an example of that: We're going to have lunch now. Would you like soup or pasta? Now, that's going to be based on whether or not they're going to be able to answer that question. So you might just have to rely on what you think their preference is going to be. Use person-centered language. Always refer to your person by their first name. Speak to them directly. Use nonverbal cues and eye contact, a gentle touch, and a calm tone. These help with reassurance. Redirection. If you need a Lisa Skinner redirection tip, gently guide them to a different activity if and when their agitation arises. And that's not going to apply to every single person at their end of life Stage. Now, during the middle stage, we see often a delayed response and a lot of repetition. Offer choices with limited options, no more than 2, if they can respond. So you might ask, would you like tea or water, as an example. Establish routines and cueing visual prompts that are consistent daily sequences, and this can reduce their confusion. Consistent with their daily sequences. Use visual and environmental prompts such as photos, label items, and familiar objects to aid in their recognition. Acknowledge confusion or fear and avoid arguing about their reality. Now, late stage, we usually see minimal communication, but we always are focused on their comfort, period. You want to focus on senses and their presence. So you can do this, you can accomplish this by offering soft music, familiar scents, and a gentle touch, maybe a hand massage, goes a long way, or just even a simple reassuring touch. Hand holding or cradle-like positioning can be comforting if they'll accept that. Continue to monitor for signs of discomfort and communicate with caregivers about changes. Document those changes. Encourage loved ones to spend quiet, supportive time, even if they're not actively communicating. They know they're there. They know you're there. Speak slowly, use short sentences, and pause so they can comprehend what you're saying to them. Only use one idea per sentence and avoid multiple questions at once. One of the things that you also want to do in advance, and this is not always easy for every family, um, to do, is to plan for post-death support for the family members. Hospice and community organizations often provide bereavement programs. Plan ahead. So here are some additional practical tips. I think it— I highly recommend developing what we call a care diary. And in that care diary, you would want to track their symptoms, changes in symptoms, mood, appetite, sleep, hydration, and any reactions that you notice that they might have to any medications. Note changes in swallowing ability, new pains that might show up, or infections to share with clinicians as soon as possible. And then it's really helpful to create a comfort kit for their final weeks. You could include soft clothing, a favorite blanket, familiar objects, a small photo album, soothing music, and a fan or white noise devices. Also have a plan for comfort focusing positioning plans, and that includes using pillows again to support their head, their neck, and hips. Reposition them every 1 to 2 hours. Uh, you can consider a Trapeze Bar or slide sheets to reduce caregiver strain. Check for early signs of pressure injuries, record those. Keep their skin clean and moisturized and rotate beds or chairs to relieve any signs of pressure. Hydration strategies are important when, especially when swallowing is challenging. And you can do this by offering small sips or moisture-rich foods. Ice chips or flavored ice can be extremely helpful, especially if your person really does not care for water. And use thickened liquids if and when advised. Now, oral care at the end of life is still important. Frequent mouth care to prevent dryness and discomfort is achievable, but avoid harsh mouthwashes and keep their lips lubricated with soft emollient. And for environmental comfort, maintain a stable temperature, reduce any glare that you notice is in the room, and provide access to a familiar routine in a quiet space. Implement fall prevention measures if necessary and applicable, and ensure call bells are easily reachable. Also consider bed alarms if that deems appropriate. Now, I'm just gonna finish here with some expanded communication techniques based on a couple different situations. So, the first one, if your person is confused but still oriented to person, you can say, "Hi," and you say your name. "I'm here with you. It's time for our routine. How would you like to start?" If they are not able to communicate, you can just make the statement then. "This is how I'm going to start, if that's okay with you." Hopefully they nod their head and say yes. If they say no, then that's a different approach, but I'm not going to go into that today. When agitation arises, always the first thing you want to do is validate that you recognize their emotion. "I can see this is upsetting for you. Let's take a moment and listen to one of your favorite songs." That's a great response. With fluctuating alertness, use a consistent sign or cue for "let's rest now" and attention moment to reduce arousal from frequent questions. If the person has hearing or vision impairment, the best thing to do is face them directly at their eye level. Don't stand above them and look down. That's very intimidating. And speak clearly in a normal but very slow pace. It's difficult for them to process a lot of words at this stage. So that's what I have for you today on the Truth, Lies Alzheimer's Show. And again, I'm Lisa Skinner, your host. I hope you have found this extremely valuable. And don't forget to swing by our brand new updated website. It's mindingdementia.com, and you will discover some new information and resources there, hopefully that you'll be able to use in your daily dementia journey. So thanks again for being with me today. I appreciate it very much. I will be back next week with another new episode for you. And in the meantime, have a great rest of your week, and as always, stay happy and healthy, and I'll be back next week. Take care for now. Bye-bye.

Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a Caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner's Minding Dementia support group. We're a community of like-minded caregivers, and we're here to help.