Lack of sweating — worse in MSA-P than MSA-C but some nearly-normal

Autonomic dysfunction in multiple system atrophy (MSA) includes orthostatic hypotension, urinary dysfunction, constipation, erectile dysfunction, thermoregulation (sweating and temperature intolerance), pupil function, respiration, etc.  This email focuses on sweating in MSA.

Mayo Rochester has published a major paper on anhidrosis (lack of sweating) in 232 cases of multiple system atrophy (MSA).  Quite a few of our local MSA support group members have been seen at Mayo Rochester, and a few were seen during the time period of the study — between 2005 and 2010.

Thirty-four of the 232 patients eventually had autopsy-proven MSA. We aren’t told if any of the 34 brain donation cases had something other than MSA, so I think we can assume not.  Interestingly, some of the 34 with autopsy-proven MSA had close to normal sweat function.

Brain Support Network has helped quite a few MSA families donate a loved ones brain to Mayo Rochester but I’m not sure there were any during that five-year time period of the study.

I’m unclear why it takes Mayo Rochester seven years to publish data from 2005 to 2010.  At that rate, progress is mud-slow.

I’ve copied the abstract of the anhidrosis paper below.  The full paper is available at no charge online at the Movement Disorders Journal website:

(The paper does have some cool images of anhidrosis patterns in MSA.)

The researchers drew these three conclusions:

“(1) sudomotor dysfunction is almost invariably present in MSA and even more common and severe in MSA-parkinsonism than MSA-cerebellar;

(2) a preganglionic pattern of sweat loss is common in MSA; however, pre- and postganglionic abnormalities may coexist; and

(3) the increasing frequency of postganglionic sudomotor dysfunction over time suggests involvement of postganglionic fibers or sweat glands later in the disease course.”

Here are some definitions just to understand these conclusions —

* sudomotor:  describes anything that stimulates the sweat glands

* preganglionic:  something that originates in the brainstem or the spinal cord

* postganglionic:  something that runs from the ganglion elsewhere; exists outside the central nervous system

These MSA patients at Mayo Rochester were given two tests to determine if the problem (lesion) was in the preganglionic or postganglionic part of the autonomic nervous system:

* thermoregulatory sweat testing (TST), a test of autonomic function, and

* quantitative sudomotor axon reflex testing [QSART], a test of postganglionic sudomotor function

The researchers said:  “[An] area of absent sweating on TST in an area with a normal QSART response would indicate a preganglionic lesion. Conversely, a reduced or absent QSART indicates a postganglionic lesion.”

Why was this  study done?  The researchers said:  “Although hypo- or anhidrosis in MSA is well recognized, the degree, pattern, lesion site, and temporal evolution of sudomotor dysfunction in MSA has not been systematically evaluated in a large patient cohort.”

An accompanying editorial in the March 2017 Movement Disorders Journal is titled the “many faces of autonomic failure in multiple system atrophy” (MSA).   According to the editorialists, in the anhidrosis study, researchers “show abnormal thermoregulatory sweat testing in 95% of all assessed MSA patients. Remarkably, only 16% of MSA patients complained about sweating symptoms.”

The short editorial looks briefly at other techniques to assess sweat dysfunction.  See:

OK, I think that’s enough for most of us….



Anhidrosis in multiple system atrophy involves pre- and postganglionic sudomotor dysfunction

Elizabeth A. Coon MD, Robert D. Fealey MD, David M. Sletten, Jay N. Mandrekar PhD, Eduardo E. Benarroch MD, Paola Sandroni MD, PhD, Phillip A. Low MD, Wolfgang Singer MD

Movement Disorders Journal, Vol 32, Issue 3, March 2017, pages 397-404
First published online: 10 November 2016


The objective of this study was to characterize the degree, pattern, lesion site, and temporal evolution of sudomotor dysfunction in multiple system atrophy (MSA) and to evaluate differences by parkinsonian (MSA-parkinsonism) and cerebellar (MSA-cerebellar) subtypes.

All cases of MSA evaluated at Mayo Clinic Rochester between 2005 and 2010 with postganglionic sudomotor testing and thermoregulatory sweat test were reviewed. Pattern and lesion site (preganglionic, postganglionic, or mixed) were determined based on thermoregulatory sweat test and postganglionic sudomotor testing.

The majority of the 232 patients were MSA-parkinsonism (145, 63%). Initial postganglionic sudomotor testing was abnormal in 59%, whereas thermoregulatory sweat test was abnormal in 95% of all patients. MSA-parkinsonism patients were more likely to have an abnormal thermoregulatory sweat test compared with MSA-cerebellar (98% versus 90%, P = 0.006) and had a higher mean percentage of anhidrosis (57%) compared with MSA-cerebellar (48%; P = 0.033). Common anhidrosis patterns were regional (38%) and global (35%). The site of the lesion was preganglionic in 47% and mixed (preganglionic and postganglionic) in 41%. The increase in anhidrosis per year was 6.2% based on 70 repeat thermoregulatory sweat tests performed on 29 patients. The frequency of postganglionic sudomotor abnormalities increased over time.

Our findings suggest: (1) sudomotor dysfunction is almost invariably present in MSA and even more common and severe in MSA-parkinsonism than MSA-cerebellar; (2) a preganglionic pattern of sweat loss is common in MSA; however, pre- and postganglionic abnormalities may coexist; and (3) the increasing frequency of postganglionic sudomotor dysfunction over time suggests involvement of postganglionic fibers or sweat glands later in the disease course.

© 2016 International Parkinson and Movement Disorder Society

Palliative care at any stage and earlier conversations about patients’ goals

This recent article in the New York Times by Dr. Dhruv Khullar argues in favor of (a) palliative care that is driven by patient need, not disease prognosis, and (b) earlier conversations about patients’ goals at the end of life.

Dr. Khullar makes the point that:  “Despite growing recognition that more care isn’t necessarily better care, particularly at the end of life, many Americans still receive an enormous dose of medicine in their final days.”

Some data shared in the article include:

* “On average, patients make 29 visits to the doctor’s office in their last six months.”

* “In their last month alone, half of Medicare patients go to an emergency department, one-third are admitted to an I.C.U., and one-fifth will have surgery — even though 80 percent of patients say they hope to avoid hospitalization and intensive care at the end of life.”

* “Medicare spending for patients in the last year of life is six times what it is for other patients, and accounts for a quarter of the total Medicare budget — a proportion that has remained essentially unchanged for the past three decades.”

Here are a few more excerpts:

* “Two interventions have consistently been shown to help patients live their final days in accordance with their wishes: earlier conversations about their goals and greater use of palliative care services, which emphasize symptom control and greater psychological and spiritual well-being — and which recognize that longer survival is only part of what patients want.”

* There is a push underway “to separate palliative care from end-of-life care. Many argue that palliative care…should be considered at any stage of a serious illness — not just at the end. Its use should be driven by patient need, not disease prognosis. … The vast majority of patients say they would want palliative care for themselves and their family members if understood as an ‘extra layer of support’ during serious illness.”

* “But physicians still tend to conflate palliative care with hospice care, and many don’t feel comfortable engaging in these delicate discussions.”

Here’s a link to the full article:

End-of-Life Care
We’re Bad at Death. Can We Talk?
Dhruv Khullar
May 10, 2017
The New York Times

“Making Tough Caregiving Decisions” – chapter 7 of “Caregiver Helpbook”

A course called “Powerful Tools for Caregivers” was developed by an organization in Portland.  You can read general info about the self-care education program for family caregivers at

As part of the course, class participants receive a copy of a book titled “The Caregiver Helpbook.”  Brain Support Network volunteer Denise Dagan is reading the book and will be sharing the highlights, chapter by chapter.  If you’d like far more detail that Denise’s summaries allow as well as access to the book’s terrific worksheets, note that the book is available for purchase in both English and Spanish at

The title of chapter seven is “Making Tough Caregiving Decisions.” This chapter discusses preparation for decisions regarding care, a model for decision-making regarding care, conducting a family meeting, and planning ahead.  Three “tough circumstances” are explored:  when the care receiver covers up needs; when you receive mixed messages; and when the care receiver is memory-impaired.

Here’s Denise’s report on chapter seven.



Notes by Denise

The Caregiver Helpbook
Chapter Seven – Making Tough Caregiving Decisions

Before making a decision, it is important to:

* Understand your motives, attitudes, and feelings.  These influence your ability to be an objective, effective decision maker.  Ask yourself if you are open to discussing concerns or do you just want your caree to do what you want.  How would you describe your attitude about the situation.  Are you being objective?  How do your feelings fit into the decision?  Are your feelings distorting or exaggerating the problem?  Talk to someone you trust to gain perspective if you are unsure about your feelings or believe you are exaggerating the problem.

* Learn from past experiences and those of others.  Consult other family caregivers, friends, or support group members who have made similar decisions to learn from their mistakes. Consider the timing of making a decision involving change.  What would you do differently from a prior decision or an acquaintance’s similar decision?  What helped you make a prior decision that worked well and could be applied to your current decision?  Ask others what they would do differently next time?  What professional help they found useful?  Ask the care receiver what they want to do.

* Understand the care receiver’s needs and feelings.  If you cannot communicate with them directly, get information from their health care provider, family members, and friends.  Even neighbors and local business and delivery people they utilize can provide information about their preferences. Identify areas where help is needed (driving, meal prep., housekeeping, personal care, finances, home maintenance, etc.).  Identify what the care receiver still does independently, or with some difficulty to anticipate what help may be needed soon.  Determine if the care receiver’s needs are temporary or permanent, and if help is needed occasionally or continuously.  You can get a professional evaluation from a care manager, nurse, or social worker.  Their evaluation will give you confidence in any decisions that need making for the best care.

* Involve the care receiver in decisions whenever possible.  “The goal is to help the care receiver meet his needs so he can live the life of his choosing… No adult wants decisions made for him/her, no matter how wise those decisions may be.  Talk with the care receiver about his/her desires and priorities.  When he/she sees his/her ideas or wishes incorporated into the decision, he/she has a vested interest in making the decision work.”  This “does not mean decisions are left totally up to him/her. …You can set limits… Then within those limits the care receiver can make the decision.”  There is a long list of questions to ask when faced with a decision on page 137.

* Investigate potential options.  “Try not to have preconceived ideas about what is ‘best.’  It’s important to identify all potential options and the benefits and limitations of each – from both your perspective and that of the care receiver.  If possible, the care receiver should have at least two options from which to choose.  Having some choice often helps to give a sense of control and reduce resistance.”

* Recognize the care receiver’s right to take risks.  “Mentally competent adults have the right to make choices regardless of age, as long as they are not putting others at risk.  You cannot force change or overrule the decisions of a person who is not mentally incapacitated.  However, that person…is also responsible for accepting the consequences of his/her choices.”  So, talk with them about the potential consequences of the choices you feel may be unwise.  They may be assuming you will provide care should an accident occur, or that an accident wouldn’t affect their living situation.  Facing reality might make them reconsider their choices.  If not, and an accident does happen, the decision was the care receivers, not yours.

A Model for Making Decisions

Strong emotions can arise in making decisions, especially when family members (including the person you are concerned about) have differing views of the situation, the options, priorities, and philosophical differences.

It’s helpful to have a plan to follow.  The figure on page 139 illustrates this 7-step model for approaching a decision.

1. Identify the Problem.   You need to agree on what the problem is before exploring options or trying to reach a decision.  It may help to answer these questions:
* How does the problem present itself?  What has been observed?
* Why is there a problem?
* What makes it a problem?
* Who is affected?
* What is the current situation?  How widespread is the problem?
* What are the consequences if a decision is not reached about the problem?

It is important to move from generalizations to specifics.  Then, the problem doesn’t seem too large or too vague to tackle. Generalization example:  Dad is a poor driver.  Specific example: He was cited for running a red light.  He straddles the center line.  Three neighbors have complained.

2. Gather information.  This provides a stronger base for decision making.  Get objective information about the person’s health and level of functioning from all relevant sources, Including the community and family about their health and financial situation.

3. Generate Options.  Brainstorm.  This is thinking of as many ideas as you can, without criticism or judgement, to address the problem. This increases the likelihood of selecting the best option.   Health care and social service professionals can help identify options.  Be sure to keep this step separate from Evaluating Options so as not to censor ideas as they are presented.

4. Evaluate Options.  “With most decisions there is no one ‘right’ or ‘perfect’ course of action. … Any decision you make is likely to have both positive and negative consequences.”  Evaluate these positive and negative consequences to determine the best outcome for your family.  Ask yourself:
* What are the potential benefits of this option for my family member?  For myself?
* How likely is it that these benefits will occur?
* What are the limitations or disadvantages of each option for the care receiver?  For myself?

Consider both short and long-term consequences.  An option should not unfairly burden anyone, so it is critical everyone is honest about what they can and cannot do.

Agreeing on standards for evaluating the options – criteria such as financial limits and personal preferences – can also help you select the best options(s).  You might find combining two or more options results in the best decision.

It may be helpful to prioritize the options and to develop a back-up plan if your first choice doesn’t work well.

Writing identified options on a chart like the one on page 142 helps organize ideas.  It essentially recommends writing down each option and making a pros & cons list for each one.  It gives a visual model of how you reached your decision.  It also helps all the choices from becoming overwhelming.

5. Create a Plan.  You may feel you are choosing the ‘least worst’ option, but if your choice meets the care receiver’s needs and you tried to preserve the greatest control and freedom for him/her, consider that it is the best decision for now.

Develop a step-by-step plan for implementing the plan.  Put it in writing and indicate who has agreed to do which task to reduce disagreements.  The plan can be useful later when you evaluate the outcome.

6. Act on the Plan.  Establish a trial period of _____ weeks/months, then look at the plan again.

7. Reassess the Plan.  Situations change, so flexibility is the key to quality decision making.  Although reassessing can be hard to do if you want closure, don’t be tempted to skip this step.  Making necessary adjustments is decision making at its best.  Be prepared to go back through the whole process.

Holding a Family Meeting

“A family meeting is one tool for deciding how to share caregiving responsibilities and for making caregiving decisions.  It gives everyone an opportunity to discuss concerns, identify current or potential problems and solutions, and negotiate the sharing of caregiving tasks.  It can also reduce misunderstandings and clarify each person’s expectations.  The following guidelines can help insure the effectiveness of a family meeting.”

Include Everyone.  Siblings, spouses, other relatives, housemates, the person for whom plans are being made, close friends, and neighbors.  Don’t exclude anyone because of distance, means, or an argumentative nature, etc.  This ensures greater support and helps prevent undermining of decisions.

Consider a Two-Step Meeting.  The first meeting is held without the care receiver to freely air concerns, discuss responsibilities, etc.  The second meeting is held with the care receiver, who is then actively involved in looking at options and making decisions.

Plan for Success.  A family meeting is most successful when you do the following:
* Beforehand, ask family members to list their concerns and the tasks they are willing to do.
* Hold the meeting in a neutral setting.
* Create a feeling of trust, support, and confidentiality.
* Keep the meeting focused on the current concern rather than other issues of past conflicts.
* Ensure everyone has an opportunity to express feelings, voice preferences, and offer suggestions without being put down.
* Focus on the positive.  Identify what each person can do, but encourage everyone to be honest about their limitations.
* Prepare a written plan, listing what each person will do and when they will do it.  Keep it flexible.  Stuff happens.

Use a Facilitator.  A family meeting is not easy, especially if members have never discussed feelings or family issues, or if conflicts already exist.  If these are likely to prevent rational discussion, seek professional guidance.  A counselor, health or social service professional, private care manager, or member of the clergy trained in family counseling may be able to facilitate and provide objectivity.

Making Decisions Under Tough Circumstances

“Special circumstances or difficult relationships may hamper decision making.  Sometimes people hide problems, send mixed messages about what they want or will do, or cannot participate in decision making.”

When the Care Receiver Covers Up Needs.  It may be because “they fear they will be forced to move or accept in-home help.  If involving them in the decision and reassuring them of your intentions doesn’t help…try these steps.”
* Talk to others in the family.  Ask what they have observed.
* Ask friends and neighbors if they have concerns.  You may be surprised how much they do for your family member.  Engaging them in the process further strengthens their support system.
* Talk to local business people (grocers, druggists, fast food employees) and those who provide services like mail delivery and garbage pickup.  Let them know you value their watchfulness.  Give them your contact information if see a problem.
* Write down your findings.  With permission, include names and phone numbers of those looking out for your care receiver.
* Seek professional advice.  Ask the care receiver’s healthcare provider for information about professionals who can evaluate the care receiver’s functioning and needs.

When You Receive Mixed Messages.  “Often mixed messages indicate that the care receiver is thinking about the impact of a decision. Try sharing your observation of the mixed messages and talking with him/her about what they represent.  Listen carefully.  This allows him/her to express feelings and may reassure him/her that you are sensitive to his/her position, uncertainty and feelings.”

When the Care Receiver is Memory Impaired.  Consider the preferences of the person over time and incorporate those into your decision making.  Gather the advice of relatives and the care receiver’s physician.  You can then feel confident your decision is based on the best information available.

Plan Ahead If You Can

Consider planning ahead to be a decision making tool.  It’s not always easy, but it helps reduce heartache, increases understanding about a person’s wishes, makes decisions easier in difficult times, and reduces uncertainty and disagreements.

Enlist the participation of the care recipient to maximize their control over their lives while they are well enough to participate in discussions about declining health and long-term care, living arrangements, financial and legal issues, end-of-life decisions, and death and funeral arrangements.

“One approach is to talk with the care recipient about ‘what ifs.’ For example, ‘What if the doctor said I could no longer provide the level of care you need?’”

“Look for natural opportunities to talk.  For example, when the care receiver says, ‘When I die…’ or ‘When I can no longer…’ be receptive to a discussion” around the topic being raised, rather than dismissing it as depressing.  “Other natural times for talking may be when a family member or friend experiences a health crisis, has an accident, or when you are preparing your own” end-of-life documents.

“When making advance plans, it is important to explore options and to have more than one plan.  Circumstances later on may require flexibility.”

Metaphors for self-care and guilt vs. regret – notes from caregiver conference keynote

Some local Bay Area organizations hosted a “Caregivers Count” conference in Campbell last Saturday.  One of the speakers was Vicki Schmall, PhD, author of “The Caregiver Helpbook.” The topics for her keynote were self-care and effective communication techniques for caregivers.  Most interesting were these items related to self-care:  metaphors for self-care; taking breaks from caregiving; care management; guilt vs. regret; and focusing on what you’ve done well as a caregiver.

Many of you will recognize this book title – “The Caregiver Helpbook.”  The book is available from Powerful Tools for Caregivers (, an Oregon-based publisher.  Brain Support Network volunteer Denise Dagan has read the Helpbook and has been providing chapter summaries to BSN.   (See for these summaries.)

Denise attended the conference.  Most of Ms. Schmall’s talk was the same information as was in the Helpbook so that information isn’t repeated below.  However, Denise has shared a few highlights focusing on self-care from Ms. Schmall’s talk.



7th Annual Caregivers Count Conference
May 6, 2017
Campbell, CA

Denise’s Highlights from

Topic:  Self care and effective communication techniques
Speaker:  Vicki Schmall, PhD, author of The Caregiver Helpbook

She used a couple metaphors for self care that I found helpful — a path and a balance scale.

1. Ask yourself which path are you on, the path to self care or not?  It’s a choice.

2. She also put up a slide of a simple balance scale with the carer on one side, and the caree on the other.  Balance takes effort.  In some cases, you can image a scale balancing 3 (or more) weights, for those situations involving a carer, caree, and other family members or obligations (like employment).

I love that she said taking breaks from caregiving was to prevent – not treat – exhaustion.  What you do on your break needs to be something that recharges and refreshes you, not chores or errands, and preferably something including social interaction.  Social interaction is hard to regain once connections to social circles are lost.  Social isolation is as detrimental to health as smoking and obesity.

It is sometimes easier to seek help if you think of yourself as a ‘care manager.’  Your job is to bring family, friends, and professionals together.  Respect the views, abilities, and limitations of non-professionals.  Give them choices for how they can help and try to tailor a person’s skills to tasks that need doing.  Many carers find it helpful to keep a list of tasks on the refrigerator and show it to anyone who asks how they can help.  Let them choose what they feel they have time, energy, and skills for.

Dr. Schmall explained that her brother couldn’t bear to have a conversation with their mother after her dementia got to a certain point, but he was excellent at dealing with the care facility’s administration, paying their mother’s bills and doing their parents’ taxes.

Know the distinction between guilt and regret.  Ask yourself, “Did I do something wrong or hurtful?” or “Do I wish I had done something differently?”
* If the answer is yes to the first, you should be feeling guilt.
* If the answer is yes to the second, you are probably feeling regret.  It is often combined with grief over a loss or change.

Be open to your caree’s changing situation.  Look ahead at the disease process and at what his/her needs will be.  Plan ahead to meet those needs and to avoid feelings of guilt, and regret, because good decisions are never made during a crisis.

Focus on what you have done well.  Don’t focus on what didn’t work out, “I should have…,” or “Why didn’t I…?”  Your self-talk creates your reality.  Negative self-talk is defeating.  Positive self talk is affirming.  Good enough is the new perfect.

“My Life After Caregiving” (

Though this article was written by a woman who lost her mother awhile ago to Alzheimer’s, the messages apply to all caregivers, regardless of diagnosis.

The author of this post shares feelings and experiences she’s had post-caregiving including:
* relief:  “I felt a powerful sense of release.”
* reflection
* sadness, loneliness and guilt
* finding support:  “The need for a strong support network doesn’t end once caregiving does.”
* regaining time and money
* re-discovering happier memories

Here’s a link to the post:

My Life After Caregiving
My experience so far after the “long goodbye”
By Dayna Steele, Chief Caring Expert
Last updated: Dec 01, 2016
(First posted: June 2016)

“More Iowans face multiple system atrophy diagnosis”

Here’s a link to a nice letter-to-the-editor of The Des Moines Register about a woman’s father with MSA:

More Iowans face multiple system atrophy diagnosis
Darcy Maulsby, Lake City
Letter to the Editor
6:00 p.m. CT April 12, 2017

The daughter discusses blood pressure issues, the facial mask, small handwriting, and the medication Northera.

The letter refers to a public TV story two years ago about MSA:

“Boot Camp” Helps Dementia Caregivers Take Care of Themselves

This is a Kaiser Health News article today about a dementia caregivers boot camp.  Caregivers learn how to “manage stress, make their homes safe and handle difficult patient behaviors. They also [learn] how to keep their loved ones engaged, with card games, crossword puzzles or music.”

The author notes:  “Doctors and researchers increasingly recognize that caring for people with dementia compromises the physical and mental health of the caregivers. And that, in turn, jeopardizes the well-being of the people they are caring for. Some studies have shown that the burden on caregivers may increase the likelihood that the loved ones in their charge will be placed in a nursing home.”

If you’d rather listen to this article, click here to listen to a (very similar) 3-minute WBUR radio story:

According to the radio story, UCLA wants to start similar bootcamps around the state in the coming year.

The full article is copied below.


—————————————‘Boot Camp’ Helps Alzheimer’s, Dementia Caregivers Take Care Of Themselves, Too
By Anna Gorman
May 9, 2017
Kaiser Health NewsLOS ANGELES — Gary Carmona thought he could do it all. He’s run companies and chaired nonprofit boards. But since his wife was diagnosed with dementia, Carmona, 77, has felt overwhelmed.

“I really see myself at times crashing,” he said. “In my mind, I’m saying, ‘You know, I can’t really handle all this.’”

There was the time his wife, Rochelle, wandered outside and fell down. And the time she boiled water and walked away, leaving the burner on.

“I’m always double-, triple-, quadruple-checking everything that she’s around,” he said.

Carmona was among about 25 people who went to a Los Angeles-area adult day care center on a recent Saturday for a daylong “caregiver boot camp.” In the free session, funded in part by the Archstone Foundation, people caring for patients with Alzheimer’s or another form of dementia learned how to manage stress, make their homes safe and handle difficult patient behaviors. They also learned how to keep their loved ones engaged, with card games, crossword puzzles or music.

Doctors and researchers increasingly recognize that caring for people with dementia compromises the physical and mental health of the caregivers. And that, in turn, jeopardizes the well-being of the people they are caring for. Some studies have shown that the burden on caregivers may increase the likelihood that the loved ones in their charge will be placed in a nursing home.

“People with Alzheimer’s who have stressed caregivers have been shown to have poor outcomes,” said Zaldy Tan, the medical director of the UCLA Alzheimer’s and Dementia Care Program who created the boot camp. “Their caregivers have essentially thrown in the towel.”

People with dementia are also more likely to go to the emergency room and be hospitalized if their caregivers aren’t prepared for the job, Tan said.

That’s one of the main reasons why UCLA Health and its geriatrics division started its caregiver boot camps in 2015.

UCLA holds four boot camps a year at community and senior centers around Southern California and hopes to expand over the next year to meet the growing need. About 5 million Americans, 1 in 10 people over 65, have Alzheimer’s disease — a number that could balloon to 16 million by 2050, according to the Alzheimer’s Association.

Similar caregiver training programs have taken place in New Jersey, Florida and Virginia.

Tan started the recent session by explaining the progression of dementia, noting that in its later stages people often don’t remember their loved ones.

“Do they all reach that stage?” asked one woman, who takes care of her sister.

“They do, if they live long enough,” Tan said. “I know it’s heartbreaking.”

He also warned the group that their actions can provoke anxiety or aggression in their loved ones, inadvertently.

“A lot of times, when you see someone shift from being calm to agitated, happy to angry, typically there’s a trigger,” Tan said. “A trigger is just like a trigger in a gun. You push something and then you get a reaction.” He told them that as caregivers they were in the best position to identify and avoid those triggers.

Leon Waxman, who also attended the boot camp, said he tries not to upset his wife, Phyllis. But sometimes she gets mad, as she did that day when he dropped her off for day care while he attended the session for caregivers.

Taking care of Phyllis the past few years has been trying, he said. She can still dress herself, but she gets easily confused and can no longer make decisions.

“The hardest part for me is I don’t have a wife anymore,” said Waxman, who has been married to Phyllis for 58 years. “She’s not the same person she was 10 years ago.”

During the boot camp, recreational therapist Patty Anderson demonstrated a game caregivers could play at home: music bingo. Each square had the name of a song, and she played music.

“What’s this song?” Anderson asked the group.

“Bye blackbird,” one yelled out.

“If you have that one, mark it off,” she said.

Anderson said that even people with dementia can sometimes recognize songs and read their titles. “There’s a lot of good things that come out of this activity — just listening to music, clapping your hands, reminiscing,” she said.

In another room, occupational therapist Julie Manton explained how to prevent people with dementia from falling. She advised the group to ensure their homes have good lighting and the beds have rails, as examples. She also urged them to get rid of throw rugs.

Manton warned the participants that their loved ones might wander off and suggested the use of monitoring devices. “The key thing is to know where your loved one is at all times,” she said.

KHN’s coverage in California is funded in part by Blue Shield of California Foundation.

“Caregiver Burnout: 10 Ways to Manage Caregiver Stress”

Home care agencies often have monthly or weekly e-newsletters with good articles.  Here’s one from Home Care Assistance about caregiver burnout.  They list ten suggestions for managing caregiver stress, including:

1.  Eat well
2.  Sleep well
3.  Take a walk
4.  Stay in touch with friends
5.  Acknowledge your feelings
6.  Schedule breaks
7.  Organization is your friend
8.  Take advantage of community resources
9.  Incorporate new habits into your day
10. Talk

Here’s a link to the full article:

Caregiver Burnout: 10 Ways to Manage Caregiver Stress
Home Care Assistance
April 25, 2017

“Living Guilt Free” – notes from one-hour talk

CaregiverTeleconnection is a service offered by WellMed, a charity based in San Antonio.  These are one-hour conference calls on topics of interest to caregivers and family members.  You can find information on these conference calls at

In late April 2017, one of the audio talks featured Lucy Barylak, a social worker.  Her topic was why we feel guilty as caregivers and how we can live guilt free.  Constant guilty feelings increase anxiety and stress, contribute to caregiver burnout, and can lead to clinical depression.

Brain Support Network volunteer Denise Dagan listened to the talk and took some notes.  See below.



Living Guilt Free with Lucy Barylak, MSW
April 26, 2017

Guilt comes from our families value systems.  We feel guilty when we feel we have done something we shouldn’t have done, or haven’t done something that we should have.

It also has to do with your own self-esteem, especially due to messages from our parents during our childhood.
– If you have low self esteem you may tend to rehash situations and feel guilty
– If you have good self esteem, you are usually better able to let the situation go and accept that, either
— you have done the best you can, or
— you know to do something differently next time.

Constant guilty feelings increase anxiety and stress, contribute to caregiver burnout, and can lead to clinical depression.

Caregivers shoulder much responsibility.  Their time and energy is stretched in several directions.
Feelings of guilt can be due to:
– not having the energy to help when a reasonable request is made of you.
– not having the patience to calmly manage the demands of caregiving and losing your temper.
Try to recognize your negative response to these situations mean you are being stretched too thin.

The remedy is to:
– Learn that it is okay to say no to demands before you become stressed out, and to
– Reach out and engage some help with either your household chores or caregiving duties.
In order to welcome help into your situation, allow for differences in how tasks are performed from the way you do things.

Sometimes, caregivers feel guilty about having an enjoyable experience because their ill family member can no longer participate in the same enjoyable activities they used to be able to.  It is important to let that thinking go, because caregiver respite is important for your physical and mental health.  If the primary caregiver’s health declines, care of the care recipient will suffer.

Placement in a facility is a huge guilt-inducing issue for caregivers.  To avoid guilt over this issue:
– Talk with the care recipient about this possibility well before the need for placement is at hand.
– Engage the care recipient in the decision about when and where to move to a facility, as much as possible.
– Stop and review your value system before making the decision. Usually, placing someone isn’t until caring for them at home has become too much of a burden, physically, financially, or both.  It is not the first course of action and usually occurs after many years of family caregiving.  As long as you have considered all your options and the care recipient has good care, set aside guilt over having to place someone in a facility.

A teleconference participant says she feels guilty not visiting her Mother every day, now that she has been placed in a facility, but she works long hours and has young children so visiting is a burden.  As normal as these feelings are, it is not a realistic expectation to be able to continue visiting every day given the other demands on her time for as long as her mother will live. She needs to put some faith in the staff at the nursing home and communication in place with them to get the information she needs to know her mother has good care without turning up in person every day.

When you feel guilty, stop and do a bit of self evaluation as to what are your value systems and why do you feel guilty about the current situation.

The speaker told a story about caring for her mother.  When her mother began to need insulin injections a nurse began to instruct the speaker in how to do the injections.  The speaker declined to learn because of the demands already on her time and her queasiness over needles.  She did not feel guilty because she knew her limitations.  The nurse found someone else to provide this service, and the speaker realized it is fine to set reasonable limits.  Those making demands on you WILL find another way to accomplish what needs doing if YOU are not the one doing it.  You are simply the most convenient person to ask, but you are not the only option.

A very difficult situation is when you are caring for someone with whom you do not have a good relationship, the guilt (anger, helplessness, resentment, etc.) can kick in so you are not behaving as your best self by having a short temper, etc.  You may want to seek counseling for assistance in dealing with these feelings if you must remain in the situation.

With respect to judging other people’s choices.  They are not heartless.  They have a different value system from you.