In this episode of the Truth, Lies & Alzheimer’s, we talk about what families and caregivers need to know about end-of-life care in Alzheimer’s and dementia.

Dementia is a progressive, terminal illness, and understanding what to expect can help families make informed, compassionate decisions that prioritize comfort, dignity, and quality of life.

In This Episode:

1. Why early end-of-life conversations matter
2. How dementia progresses into late and terminal stages
3. Shifting care goals from treatment to comfort
4. Hospice vs. palliative care and when each may help
5. Managing pain, agitation, eating changes, and comfort needs
6. Supporting caregivers through emotional and physical challenges

Key Takeaway:

End-of-life care in dementia is about honoring values, reducing suffering, and ensuring no one walks this journey alone. With planning, support, and open communication, families can navigate this stage with greater clarity and peace.

https://www.mindingdementiasummit.com/

About the Host:

Author Lisa Skinner is a behavioral specialist with expertise in Alzheimer’s disease and related dementia. In her 30+year career working with family members and caregivers, Lisa has taught them how to successfully navigate the many challenges that accompany this heartbreaking disease. Lisa is both a Certified Dementia Practitioner and is also a certified dementia care trainer through the Alzheimer’s Association. She also holds a degree in Human Behavior.

Her latest book, “Truth, Lies & Alzheimer’s – Its Secret Faces” continues Lisa’s quest of working with dementia-related illnesses and teaching families and caregivers how to better understand the daunting challenges of brain disease. Her #1 Best-seller book “Not All Who Wander Need Be Lost,” was written at their urging. As someone who has had eight family members diagnosed with dementia, Lisa Skinner has found her calling in helping others through the struggle so they can have a better-quality relationship with their loved ones through education and through her workshops on counter-intuitive solutions and tools to help people effectively manage the symptoms of brain disease. Lisa Skinner has appeared on many national and regional media broadcasts. Lisa helps explain behaviors caused by dementia, encourages those who feel burdened, and gives practical advice for how to respond.

So many people today are heavily impacted by Alzheimer's disease and related dementia. The Alzheimer's Association and the World Health Organization have projected that the number of people who will develop Alzheimer's disease by the year 2050 worldwide will triple if a treatment or cure is not found. Society is not prepared to care for the projected increase of people who will develop this devastating disease. In her 30 years of working with family members and caregivers who suffer from dementia, Lisa has recognized how little people really understand the complexities of what living with this disease is really like. For Lisa, it starts with knowledge, education, and training.

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Hi everybody. Welcome back to a new episode of

the truth lies and Alzheimer's show. And I'm Lisa Skinner, your

host, today, I want to talk about 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 evidenced, 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 health care 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 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 tool that you'll want to consider having already in

place are in a. Advanced Directive or a physician's order

for life sustaining treatment. It's also referred to as a post

document, or you also want to have a do not resuscitate order

in place, and a Do Not hospitalize preference where

applicable. Those are available, comfort focused care plans and

symptom management protocols. 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 abbey 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 up to avoid

under treating 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 a 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 some of the

recommendations would be to reposition your charge every one

to two hours to prevent pressure injuries and bed sores, use

barrier creams moisture and gentle massage as they're able

to tolerate and 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, 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 we. 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. 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 fins 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, 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 Diag, 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

post forms that I mentioned ensure health care proxies and

durable power of attorney are already in place and their do

not hospitalized. Prefer. Differences 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, because there are some

things that are not allowed under hospice care that would

need a hospital transfer or long term care transfer. You want to

make sure that the DNR Do Not Resuscitate decisions are in

place, so discuss those preferences in advance while

they're still sound mind, not only with your loved ones, but

with their clinicians. And make sure that they're aligned with

the loved ones 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 seven stage model, but this is the three

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 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 two if they can respond. So you

might ask, Would you like to your water as an example?

Establish routines and cueing 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

sense 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 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 one to two hours. 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 AMOLED 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 going

to 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 youth, 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 Rex. Let's rest now and attention moment to reduce

arousal from frequent questions with 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 and 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 minding dementia.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.