The Caregiver’s Guide to Dementia

Practical Advice for Caring for Yourself and Your Loved One, by Gail Weatherill, RN, CAEd, 2020

This book is in the “Memory Care Kit, Volume 1” from the Library, that includes 6 books (this book and picture books), a 35-piece puzzle, a music CD and lyrics (songs like Talk to the Animals, Mairzy Doats, and Puppy Love), and handouts with tips and resources.

The best tip on the handout is:

“Do not contradict, correct, criticize, or confront. (Being kind is more important than being “right”).”

Good book. Easy to read and very practical. This book is shorter and better organized than the 36-Hour Day. The same information is given but in less detail. Again, after reading it, I realize Mom’s not close to “there” yet. So, that is good. But maintaining mental, social, and physical exercise are really important.

In the Introduction, she says to caregivers: “I love to show them that the glass is half full, that there are many days and moments of sheer joy yet to be lived.”

“If I’ve learned anything in my years of caregiving for people with dementia, it’s that we are not just our brains. Thought and language may come from the brain, but they’re not the whole story of who we are. We are sentient beings. We have a soul that’s not subject to physical disease.”

“When the day comes that you feel like your loved one is gone, remember their soul. Remember their values. Remember their priorities in life. Remember the feelings the two of you shared.

“None of those things can be destroyed by dementia They exist independent of space and time. Hold on to them.

“Know that no matter how far away your loved one seems to be, they’re still here. They feel you . They know you’re here. They know you’re doing all you can do…

“…Hold tight to the person your loved one still is. And never doubt that what the brain cannot remember, the heart cannot forget.”

Here are some good tidbits from the book:

“Mild cognitive impairment (MCI) is a diagnosis often surrounded by misunderstanding. Many think MCI is early Alzheimer’s disease (AD). This assumption is not correct. MCI involves symptoms that go beyond the normal changes of aging. Their effects center on memory, language, and judgment. The symptoms stop short of what would be classified as dementia.”

“The difference between MCI and AD is in the severity of symptoms. In MCI, symptoms can be annoying but don’t interfere with normal activities in life. With AD, dysfunctional memory, thinking, and reasoning cause greater disruption of daily life.”

“MCI does not always progress to AD. Studies show that 15 percent of those with MCI develop AD. The MCI glass is more than half full, considering that 8 out of 10 people with the condition don’t get worse. Some may even get better over time. The reasons aren’t fully understood.” (Page 5, Dementia explained)

“Normal Aging Change:

-Entering a room and forgetting why you went there

-Forgetting a new acquaintance’s name

-Misplacing items occasionally, but later finding them

-Forgetting something you were told

-Making a bad decision now and then

-Experiencing vision changes resulting in misty or cloudy eyesight”

“Sign of Dementia:

-Getting lost in a familiar plae

-Forgetting the name of a close friend or family member

-Putting things in unusual places, like placing keys in the freezer

-Asking the same questions over and over again, like “Where is my car?”

-Making frequent poor choices or exhibiting unusual risk-taking

-Having trouble judging distances or knowing if an object is moving or still, or seeing things others don’t see”

“In this situation, a geriatric psychiatrist can be a great solution. A good geriatric psychiatrist knows the brain and how drugs affect its function. Psychiatrists focus on behaviors and the impact on well-being in both patient and caregiver. They understand that trial and error is necessary for finding the best treatment.” (page 26-Working with a Dementia Care Team)

“Clinical trials are another potential source of help. People enrolled in a clinical trial receive a high level of care at no cost to them, such as extra diagnostic testing, thorough assessment of their condition over time, and access to treatments not yet available to the public.”

“The Alzheimer’s Association keeps a current database called TrialMatch. The service isn’t just for Alzheimer’s studies. You can see where trials are conducted (some are online) and the qualifications for each study.” (page 28)

“Anxiety and Agitation: Anxiety is common in people with dementia. It causes many of their most difficult symptoms. To understand anxiety in dementia, we must understand its origins in all of us.

Anxiety is based in fear that our needs will not be met. Everyone needs security, physical and emotional comfort, meaningful activities, and relationships. We all desire dignity, privacy, and functional competence. These needs and desires are what makes us human.

When we’re uncertain about how these needs will be met, we become anxious. this normal human response doesn’t go away in the presence of brain failure. It only intensifies as confusion grows.”

…”Our loved one’s humanity never leaves them, even when others forget that fact. No matter how baffling their anxiety symptoms become, they’re acting out of need. Look beyond the symptoms to the human feelngs that might be causing them. What we see is evidence that their humanity is still intact. they are always still in there somewhere.

What to say:

-“I’m sorry you feel so bad. What bothers you the most?”…

-“You’re safe here.”…

-“I’m here for as long as you need me. You’re not alone.”…

What to do:

-Use a calm, low-itched tone of voice. …Fewer words and warm reassurance are key.

-Minimize distractions in the environment, like the television or too many people around at one time.

-Avoid explaining that their fears and anxiety are not based in reality… Well-intentioned attempts to help them see their fear is unfounded only make things worse.

-Attempt to distract or redirect. Ask for help with a task. Put on their favorite music. Share a snack.

-Diffusing essential oils, like lavender, can reduce anxiety. You can also put a tiny drop of lavender oil in a teaspoon of coconut oil or hand cream and rub it on your loved one’s hands. When they begin to get upset, they can loosely cup their hands around their mouth and nose. Show them how to take slow, deep breaths to help relax.

-Keep a daily routine Predictability is a crucial deterrent to fear….

-Keep them moving…”

(from page 41, 42, 43, 44)

“Here’s a tip to help both depression and anxiety: If you can find mindfulness-based stress reduction (MBSR) training near you or online, take it….There’s strong evidence that MBSR can benefit both caregiver and care recipient for years.” (from page 45-46)

“Many things that help anxiety also help depression. Strive for physical activity, such as walking, most days. Keep a daily routine. Get rest and sunshine. Lay off the junk food. Don’t hide away from family or friends.” (from page 47)

“Here’s a routine you can try this week. Write down the five senses: sight, hearing, taste, smell, and touch. For each sense, name two things you love. You now have a list of 10 delights. At the end of each day, look at your list. How many delights did you give yourself that day? Make a goal of not letting a day pass without indulging a minimum of two senses with something you love.” (from page 60)

“People with dementia will eventually lose their ability to swallow. Eating and drinking require signals from the brain to activate strong muscles in the neck and throat. When those signals fail, knowing what to do with food or fluids in their mouth also fails.”

“At this stage, a well-intentioned but uninformed physician may offer a feeding tube. The American Geriatrics Society issued a position statement in 2014 against using feeding tubes in advanced dementia. Multiple studies prove that feeding tubes do not extend life expectancy. They only cause more suffering the the time that is left.” (from page 65)

“Taking away the car keys is a heartbreaking milestone but one that may save lives. Dementia care programs at some major medical centers offer driver testing and rehabilitation. Conduct a search online for “driver rehabilitation” in your area. Or contact the nearest teaching hospital to ask if they have a specialized memory care program.” (from page 81)

“Consult the Alzheimer’s Association’s home safety checklist…The checklist gives you room-by-room details of what you can do to eliminate hazards.” (from page 82)

“Whenever you need it, here’s a simple exercise you can use to slow down anxious thoughts. Do your best to hide, or find a spot where you won’t be interrupted for five minutes. Sit or lie down in a position that feels comfortable.

Close your eyes. Take three deep breaths in through your nose and out through your mouth. With each breath, breathe in calm; breathe out fear. Breathe in calm. Breathe out fear. Now, breathe normally to proceed.

Keep your eyes closed until you have heard five distinct sounds. If you live near a busy road, passing cars don’t count. Listen for the ticking clock, the hum of the air conditioner, the muted sound of the television at the other end of the house, sounds you may not normally notice. I almost always find that I have to listen so carefully to hear five sounds that I forget all else for that moment. Moments of peace will save us over time, but we often have to create them for ourselves.” (from page 87)

“Power-of-attorney documents may be durable or medical. You need both….

…Guardianship is for someone who no longer understands their own actions but insists on making decisions for themselves.” (from page 95)

“-Educate yourself on the recommended legal documents. Go to and type “legal documents” in the search bar to find the Alzheimer’s Association’s thorough guide to legal matters. …

“Look at an advance directive tailored for use in dementia care. A great example is at Look this form over before seeing an attorney to optimize the use of time when you do meet.” (from page 97, Financial and Legal Decisions)

Under ‘Hospice:’

“For someone with dementia to qualify, they must be unable to walk, dress, or bathe on their own. They must be incontinent of bowel and bladder intermittently or always. Their speech must be mostly unintelligible.”

“Someone with dementia needs to meet those conditions and have had one of the following within the past 12 months: aspiration pneumonia, pyelonephritis, septicemia, multiple bedsores at stage 3 or 4, fever returning after antibiotics, difficulty swallowing or refusing to eat, weight loss of more than 10 percent of their body weight, or a body mass index less than 18.” (from page 117, End-of-Life Care)

“How could anyone watch someone they love struggle with a terminal illness without feeling deep sadness? Sorrow and grief become constant companions as we experience losses both big and small. Dementia has been called “the long goodbye” for a reason.” (from page 128)

“Any caregiver who says they never wish their loved one would die sooner rather than later is either in denial or lying. This thought is not shameful. Why would wishing your loved one to be free of dementia ever be anything but an act of deep love? Yet we beat ourselves senseless for thinking that way.”

“Watching a loved one decline from dementia has been called “the long goodbye.” The danger of this mindset is it can prevent us from recognizing all that still remains. If we focus our attention solely on what is lost, we intensify our grief beyond what we would otherwise experience.”

“Dealing with grief and loss in dementia care requires a two-pronged approach. First, we need to recognize, acknowledge, and give voice to our grief. Second, we need to understand that all is not lost, that our loved one still has meaningful moments ahead, and that we must pay attention or we’ll miss them.”

“Living one day at a time is the only way to survive dementia caregiving….” (from pages 132-133)

“One way to stay present in today is to do a body scan. This mindfulness method is a way of connecting with the here and now. You can do an online search for “body scan” to find audio guides….What feels weird in the beginning can eventually provide sweet relief if you practice.” (from page 134)

“Memory cafes aren’t support groups in the formal sense but provide great informal support. These social groups meet regularly. They provide people living with dementia and their caregivers a chance to relax and socialize with others who understand their situation.” (from page 153)

Under resources:

“-Checklist and tips on finding an assisted-living facility:”

“-Body scanning:

-Meditation apps:

-Mindfulness-based stress reduction, free course: