Same pattern of brain function loss in some dementia as in savants

In CBS Sunday Morning story from today, Dr. Bruce Miller from UCSF describes his work with some dementia patients.  He has compared brain scans of dementia patients with those of a child savant:

“We are seeing the same pattern of loss of function on the left side of the brain, [with] increased function in the right posterior parts of the brain, the parts that allow us to take something visual in our mind and put it on a canvas.” 

In some dementia patients — so called “acquired savants” — “the disease that destroys some brain areas activates others, unlocking hidden talent.”

Watch the full TV story here:

The story features one patient with frontotemporal dementia.



“When Should You Move Your Parent Into Your Home?”

This is a good article from Next Avenue ( about steps you should take before deciding if you should move a parent into your home.  The author points out that just because a decision is “right” doesn’t mean that implementing it will be “easy.”



When Should You Move Your Parent Into Your Home?
Take some other steps first, an expert advises
By Eileen Beal, Benjamin Rose Institute on Aging
Next Avenue
March 16, 2018

If you are thinking about moving your parent in with you, ask yourself what’s going on in his or her home that’s made you think your mom or dad would be better off in yours.

In many cases the concerning issues — our parent isn’t eating right, the house isn’t as clean as it used to be, bills aren’t getting paid, doctor’s appointments are being missed, you get a call from your mom or dad at work 3 or 4 or 5 times a day, among others — don’t necessarily mean your parent needs to move in with you. They may mean your dad or mom (or both) needs help staying in his or her home.

“First, try bringing help into the home,” advises Judy Verba, a social worker at Benjamin Rose Institute on Aging in Cleveland. “If that doesn’t work, it probably is time for them to move, but don’t assume they should move in with you.”

The decision to bring your parent or parents into your home shouldn’t be made quickly. Verba also stresses, “It must be a decision that’s right for them and you.”

Right Doesn’t Mean Easy
To arrive at the “right” decision, you need to share with your parent your concerns about his or her safety, well-being and care. And where possible, your parent needs to share with you any concerns about moving.

“Whether the decision is to move in with you, or someplace else, it must be mutual,” says Verba.

You also need to consult your parent’s primary care physician or a geriatrician.

Verba explains: “That will give you good insight into their overall health status, the progression of any chronic conditions, and what to expect — and plan for — as their care needs change.”

Asking Questions
Ask yourself, and immediate family members, these hard questions, too:

What kind of relationship do you have with your parent?

“In theory,” says Verba, “if the relationship has been good, you’re in the best position to provide the best environment and care.”

Is your home the best option?

“Don’t just think about the home’s physical environment and location,” says Verba. “While it works for you, if it moves them away from their community, it might not work for them.”

What are the challenges you should expect?

The family dynamic will change. “When another person is added to a household,” says Verba, “it pushes everyone out of balance until they figure out how the new situation works.”

Household expenditures — for utilities, special foods, grab bars, transportation, and the like — will go up. “That is why it’s important to sort these kinds of issues out before the move is made,” says Verba.

The parent’s care needs will increase. Says Verba: “Those increased needs will require more of your time and energy, which could lead to cutting back on time with other family members or ignoring your own health needs. It might even force you to cut back on — even give up — employment, too.”

What kind of help and support can you expect from your siblings?

The amount you receive from your brothers and sisters depends on your family.

“Sometimes they are so relieved you have taken the lead that they do everything they can to support you,” says Verba. “Sometimes they feel absolved from responsibility. And sometimes they never get with the program and you just have to deal with their snipping and snide remarks.”

Rewards Are Real
While the challenges that come with caring for a parent in your home are real, so are the rewards.

“You are both going to know that they are living where they want,” says Verba. “And you both get to know each other in a unique way and at a unique stage in your lives.”

For many adult children, it’s also a chance to show their love and gratitude. “Their parent cared for them when they needed it and now they can care for their parent when they need it,” says Verba.


“In Oregon, pushing to give patients with degenerative diseases the right to die”

Here’s an excerpt from yesterday’s article in The Washington Post about the efforts in the state of Oregon to allow patients with degenerative diseases the right to die:

“People with Alzheimer’s, Parkinson’s, Huntington’s, multiple sclerosis and a host of other degenerative diseases are generally excluded from the Oregon [medically assisted suicide] law.  This is because some degenerative diseases aren’t fatal. People die with Parkinson’s, for example, not because of it. Other diseases, such as advanced Alzheimer’s, rob people of the cognition they need to legally request the suicide medications.” 

Some in Oregon are considering changes to this law or a new law that would allow people who do not have dementia to say that they do not wish to be spoon-fed if they do develop dementia.

Here’s a link to the article:

“Minimizing Caregiver Fatigue” – webinar notes

Janet Edmunson hosted a webinar today (March 6, 2018) on minimizing caregiver fatigue. Brain Support Network volunteer Denise Dagan listened in and shared notes.

Updated:  The archived recording of the webinar has not yet been posted to Janet’s website,  However, Janet provides this link to the recording:
(you have to register with your name and email address to view the webinar)

Usually the recordings are only available for a short time.

Janet is a long-time friend. She has visited our local support group a couple of times (long ago). She wrote a wonderful book called “Finding Meaning with Charles,” about her late husband Charles. I receive her weekly “caregiver affirmations.” She has occasional webinars on caregiving topics.



Minimizing Caregiver Fatigue
Webinar presented by Janet M. Edmunson ([email protected])
March 6, 2018

Caregiver fatigue indications can include snapping at your care recipient or feeling like you are running on fumes (physical and mental exhaustion). Even long-distance caregivers can experience caregiver fatigue through stress and worry.

The two sides of caregiver fatigue are:

1. Physical exhaustion
– Being tired most of the time
– Tendency to become sick / increased vulnerability to illness
– Frequent headaches, back pain or muscle aches
– May have change in appetite or sleep

2. Emotional fatigue
– Feeling helpless or trapped
– Self doubt
– Sense of failure
– Develop a pessimistic view of life and/or the world
– Withdrawing from social events

Sources of emotional fatigue (examples, but there are many more):
– Dealing with dementia repetitiveness and constantly being on your toes to mange dementia behavior
– Constant to-do list / no relaxation or breaks
– Not having time for yourself

Emotional fatigue can lead to:
– Insomnia
– Illness or physical symptoms (higher blood pressure, weight gain or loss, heart palpitations, headaches, gastrointestinal distress, etc.)
– Crying easily
– Detachment from your relationship and activities you love, even neglect or abuse of your care recipient
– Irritability / anger
– Lack of Motivation
– Hopelessness

Signs of emotional exhaustion:
– Low tolerance to stress and stressful situations. Short fuse.
– Inattentiveness or inability to focus
– Making simple mistakes
– Lack of motivation and zeal for life
– Loss of creativity
– Physical fatigue

What to do about emotional fatigue?
– Pick your battles. Ignore the small stuff.
– Use humor to diffuse emotional stress or assault.
– Join a support group.
– Spot small opportunities to rest your mind, even for just a few minutes for relaxation, deep breathing or mindfulness.
– Take things one step at a time. Prioritize. Not all things are worth doing. Stop “low yield” activities.
– Ask for help! Rotate responsibilities with family members and/or friends so you don’t have to do everything all the time.
– Mix up your environment (beach, mall, friends, family visits). Go outside.
– Stay social with old friends and make new friends, especially through support groups.
– Examine what drains / depletes you? What energizes you?

What drains your energy? Make a list that is unique to you!.
– Negative impact of dementia: the amount of patience, creativity and quick thinking on the part of the caregiver.
– How long it takes to do everything due to immobility or cognitive issues so caregiver runs out of time.
– Increased responsibilities (taxes, cooking, housework, car repairs, etc.) that you never had to do before.
– Not having someone to turn to and/or talk to.

Janet’s personal draining list:
– Cooking (Janet is a bad cook, so lots of frozen dinners when she was a caregiver)
– Worry
– Dealing with incontinence.
– Frustration in understanding Charles’ speech
– Getting Charles ready in the morning and at bedtime & doing his range of motion exercises every day.
– Fixing something broken at home
– No time for herself

What builds your energy? Make a list that is unique to you!
List things that you miss or look forward to.

Janet’s personal energy building list:
– Have visitors over
– Time alone (read a book, watch a favorite TV show, take a walk or hike, get your hair and/or nails done, etc.)
– Running or walking with Charles or by herself on the treadmill
– Watching a great movie
– Daily frozen yogurt
– Talk with friends or family on the phone

After you’ve written your list, figure out how to fit at least one thing on your list every day.

Take advantage of when your care recipient and/or yourself have more energy naturally, like the morning. During that time do activities that take more energy or that you love to do. Keep a journal to figure out when this happens daily for you and your care recipient.

What to do about physical fatigue.
– Be aware of its affect on your health, like weight gain or loss, increased blood pressure. You can’t do anything about a problem you don’t recognize as being a problem.
– Get adequate hydration. Dehydration taps your energy. Your urine should be clear, pale yellow or straw colored.
– Fit in some kind of physical activity. Exercise will actually energize you.
– Make time to do nothing. Especially, if you are caring for someone with dementia, just 10 minutes alone can revitalize you. (Some caregivers have told Janet they hide in the garage or bathroom to get their 10 minutes of alone time.)
– Keep time with your body clock. Get chores done when you have peak energy.
– Get enough sleep!

The caregiver’s struggle getting enough quality sleep.
In Janet’s experience, Charles would wake every hour for over a year. He required turning, toileting, etc. and Janet had difficulty getting back to sleep. For some time she took Tylenol PM so she could get back to sleep. This is not advised. After awhile she went to bed with him until he fell asleep, then moved to sleeping on the floor so his waking didn’t wake her as often. She wanted to be in the room with him, rather than down the hall. Her sleep improved when he got a hospital bed and better when he moved into a facility.

Many emotional issues interfere with quality sleep even when we are not caregivers, like worry over finances, arguments with friends or family, etc.

Why we need sleep:

Information from Matt Walker’s, book “Why We Sleep.”
Adults over 65 need 6-8 hours nightly. We sleep in 90-minute cycles. Within that 90 minutes there is non-REM sleep and REM sleep (REM = rapid eye movement)
non-REM sleep has 3 stages, followed by REM sleep, which is when we dream, store memories, etc. The % of time in REM sleep increases throughout the night so if you sleep fewer hours you get less REM sleep.

During sleep we put down memories and increase our learning. REM sleep washes away toxins (prevents Alzheimer’s?), improves immune system so we get sick less often, increases killer cells that fight cancer, increases creativity and insight. REM sleep is anti-imflammatory. Ironically, the more tired you get the less tired you feel so you may not be aware of the loss of sleep’s impact on you.

Getting better sleep.

Sleep habits
– Make sleep a priority. This means you will have to give up or postpone something in favor of sleep.
– Get a sense of calm before going to sleep. Apps on the phone you can learn from: Head Space or Calm.
– No TV an hour before sleep
– No stimulants or sedatives before bedtime. This includes caffeine, smoking, alcohol (fragments sleep and blocks dreaming)
– Get activity during the day, but not too close to bedtime.
– Set a consistent schedule (sleep and wake at the same time, even weekends)
– Limit naps duration and no naps after 3pm
– Reserve your bed for sleep (not work, TV, etc.)
– Get sunlight during the day
– Yoga poses for sleep. (Lie on back close to wall, put legs up wall and hold for a few minutes.)

Sleep environment.
– Make your sleeping space dark. Use a motion detector nightlight as it is less bright and disturbing to sleep. Use an eye shade or eye mask.
– Keep your room cool
– Keep electronic devices out of your bedroom. The blue light from screens sends your brain signals to be awake.

Tips for falling and staying asleep.
– Take your tongue off the roof of your mouth, which tricks your brain into thinking you are near sleep.
– Keep paper by your bed. Write thoughts that keep you awake or journal to attain calm before sleep.
– Relaxation techniques: Deep breathing, counting, progressive muscle relaxation (contract, then relax in sequence from toes to head), recite lyrics to a song (America the Beautiful while visualizing America’s beauty), pray. All these techniques distract yourself.
– Get out of bed and read for 20 minutes if you are not falling asleep. Then, repeat calming routine and when you feel sleepy return to bed and try sleeping again.

Cognitive Behavioral Therapy (CBT) can also help sleep by replacing anxiety with positive thoughts. Can be more effective than sleep medications. Janet’s modified CBT is to talk to herself, “I deserve sleep,” “Everything is under control,” etc.

Online CBT for insomnia programs (not free) presented in
– CBTforInsomnia
– Cobalt Therapeutics’ Restore
– Sleepio

Caution with medications.
For people with Parkinson’s, some medications can interfere with sleep. Ask your doctor if yours or your care recipient’s medications can interfere with sleep. Antidepressants can help sleep. Janet is finding this true for her mother.

Sleep medications sedate you so you are not going through the stages of sleep so it is not good quality sleep. There is an increase of death and cancer associated with them. They are only meant for short term use, but caregivers tend to use them longer than intended.

Janet’s experience with Ambien with her mother who took a half-pill for years. Ambien is recently suspected in contributing to car accidents and other incidents of great concern. Janet’s mother began passing out. Bad falls took her to the hospital. Eventually, they realized Ambien was probably causing the fainting (and falls). When she stopped taking Ambien, she stopped passing out, falling, and being exhausted.

Benadryl dehydrates users, so it is not your best choice for a sleeping medication, either.

Promoting better sleep for your care recipient.
– See the lists above under ‘Getting better sleep’
– Restrict eating and drinking within an hour of bedtime.
– Go over their medication list with their doctor.
– If they get up, remain calm. Don’t start a fight or nobody will get back to sleep.
– For Charles, Seroquel helped him sleep, but he needed an antipsychotic due to his diagnosis.

– National Sleep Foundation:
– Matt Walker’s Book, “Why We Sleep”

Your Action Plan: What ritual will you adopt for better sleep?

Q. What about melatonin or CBD oil (non-psychotropic)?
A. It helps you fall asleep, but doesn’t help you stay asleep. Melatonin is not good for PSP. CBD oil comes from marijuana. Janet doesn’t know how it affects sleep, but ask your doctor.

Q. I don’t go to social events because I might bring the party down. I am caring for my wife with PSP.
A. Some people can’t handle a neurological disease, but it shouldn’t stop you from attending social events. Don’t worry about bring ing the party down. Find those who want to be supportive. Plan a short response to how your wife is doing and move on to other topics.

Q. How do I avoid feeling caregivers have invaded my space? I feel I have to leave my home when they are present.
A. It is great you are getting help, but don’t let these feelings stop you from receiving help. Try setting aside a space in your home where caregivers are not allowed. Remember the serenity prayer, “accept the things you cannot change.”

“Elder Abuse: Sometimes It’s Self-Inflicted” (NYT)

This is a story of a man living alone with two dogs in San Antonio, TX.  Someone called adult protective services, who sent a caseworker to the man’s home.  The caseworker found a bad situation, which pointed to an under-recognized problem called self-neglect.  “Self-neglect refers to someone whose behavior threatens her health and safety.”  Case workers “look for factors like hoarding (of objects or animals), poor personal hygiene and unsanitary conditions.”

Self-neglect “accounts for more calls to adult protective services agencies nationwide than any other form of elder abuse.  Yet efforts to identify and help older people who neglect themselves often collide with Americans’ emphasis on self-determination.”

“Family members get fed up and don’t want to get involved,” said Courtney Reynolds, a research analyst at the Benjamin Rose Institute on Aging in Cleveland. “They attribute it to a character issue, like stubbornness, instead of a decline in the person’s ability to manage.”

Read the article to learn what happened next…

Elder Abuse: Sometimes It’s Self-Inflicted
The New Old Age: The New York Times
By Paula Span
March 2, 2018