Moderate improvement in latency to a PSP diagnosis over 20 years (Golbe)

I ran into Larry Golbe, MD, a PSP expert at a conference last week. He pointed out this interesting interesting article from late 2018. It’s about the reduced time to diagnosis in the New Jersey area for those with progressive supranuclear palsy (PSP). In the 1990s, the time from onset to diagnosis was about 44 months (just under 4 years). In the 2010s, the time from onset to diagnosis was about 29 months (about 2.5 years).

“Diagnosis of PSP earlier in the course may reduce its psychological and financial burden, permit earlier access to neuroprotective interventions, and avoid unnecessary diagnostic and therapeutic measures.”

Senior author Larry Golbe, MD and others speculate why there’s been a moderate improvement in latency to a PSP diagnosis. One thought is that there’s improved awareness among clinicians and the public about PSP due to the efforts of CurePSP, the advent of the web in the 1990s, and the public announcement by celebrity Dudley Moore of his diagnosis in 1998. (Moore died in 2002.)

Another thought is that clinicians have gotten better at recognizing those with PSP who don’t exhibit the “classic form.”

Several other guesses are made but you’ll need to read the full article, which you can find here: (available at no charge)

Is the Latency from Progressive Supranuclear Palsy Onset to Diagnosis Improving?
by Mansoureh Mamarabadi MD, Hadie Razjouyan MD, MPH, and Lawrence I. Golbe MD
Movement Disorders Clinical Practice
First published: 02 September 2018

onlinelibrary.wiley.com/doi/full/10.1002/mdc3.12678

What do you think is the reason that the latency to receiving a diagnosis has improved?

Robin

3-step Framework for Diagnosing Dementia (Brad Dickerson, MD)

In this five-minute video, Brad Dickerson, MD, a neurologist at Mass General, describes a 3-step framework for diagnosing dementia:

www.mdmag.com/peer-exchange/early-diagnosis-dementia/recommendations-for-diagnosing-alzheimer-disease

Here are excerpts from the transcript:

Currently, I think we advocate for a 3-step framework that starts by describing the person’s overall cognitive functional status. What we mean by that is, does the person have mild cognitive impairment? Does the person have dementia? … What we really need to do is interview the person and, ideally, an informant, and find out what they are lacking in terms of independent functioning. What have they lost? What do they need help with?

[This] ultimately has major implications for the care plan. Establishing whether the person has mild cognitive impairment or dementia is very important, and I think that threshold varies from person to person and can be quite an arbitrary decision that really takes some clinical experience. Ultimately, what I like to ask people is, if you, as the care partner, can leave the person and go on a trip for a weekend or a week, would they function independently at the things that they need to try to get done to get by in daily life? If the care partner says, “No, I would never do that,” you can pretty comfortably say that the person probably has crossed the threshold into dementia. I think that’s the starting point, No. 1.

No. 2 is, what’s the particular cognitive behavioral syndrome that the person is experiencing? …[Is] the main problem memory loss? Is the main problem executive function? Is the main problem language? Are there multiple problems? A lot of times we see, I think, this common presentation of a person who has memory loss. They’re just not holding on to information, and they also have executive dysfunction. They’re not able to reason. They’re not able to perform tasks to the level that they used to be able to in order to get the job done to reach goals in a valid way.

I think that the syndrome is really meant to capture the major symptoms and signs that the person has of their illness. And that communicates important information to our colleagues and to the patient and family about where their problems are. I think it also allows you to highlight…what their strengths still may be. If this person has a primary memory loss syndrome but their executive function is still good, maybe they can make use of strategies to compensate for some of the problems that they’re having with memory. If they have executive dysfunction, they’re probably not going to be able to do that. Ultimately, that cognitive behavioral syndrome, that second level of specificity in our diagnostic formulation, communicates, in shorthand, to us and to others what the person’s problems are and maybe what they can still do.

And then the third level is, what’s the brain disease that is the cause of the problem? Sometimes it’s multiple diseases. Often, it’s compounded by other medical problems or things like medication effects that affect brain function but are not necessarily a disease in and of itself. The most common, I think, is Alzheimer disease mixed with cerebrovascular pathology in an older adult population—people over the age of 70, 75. In the younger people, I think it can sometimes be a more pure condition, whether it’s Alzheimer disease, or frontotemporal degeneration, or Lewy body disease. Those can often be primary diseases, especially in younger people.

That’s really the 3-step formulation that we advocate that we try to follow. It’s not always possible to be 100% confident in any 1 of those levels, and I think that’s where we have to talk about likely due to Alzheimer disease or likely due to cerebrovascular disease, and rate our level of certainty so we can think about whether we need some additional specialty involvement. If so, what does that involve, and how important is that in thinking about the management? We don’t necessarily have to have the sophisticated biomarkers that we talk a lot about in every individual with dementia likely due to Alzheimer disease. I think there are plenty of people we can all diagnose with fairly straightforward assessments and tests and not do the multimillion-dollar work-up on, that we often end up spending time talking about in the more specialized cases.

 

“Self-Compassion for Caregivers” – Webinar Notes

Recently, Janet Edmunson (janetedmunson.com) presented a webinar on self-compassion for caregivers. Our friends at Stanford’s Parkinson’s Community Outreach program took notes. Denise Dagan reports:

In the webinar, Janet relied heavily on Dr. Kristin Neff’s book, “The Mindful Self-Compassion Workbook.”

Essentially, Janet shared that it is a common experience to be our own harshest critic. We may chastise ourselves for losing patience with our loved one, yet tell a fellow support group member that everyone loses their temper sometimes.

Being overly critical increases caregiver stress, depression and anxiety, while self-compassion decreases caregiver stress and, thereby, improves mood, energy, overall health and wellbeing.

Dr. Neff’s book suggests that we can change our habit of being overly critical with ourselves by being mindful of overly critical behavior and replacing that behavior with self-compassion.

Check out the Center for Mindful Self-Compassion’s self evaluation test:
centerformsc.org/learn-msc/take-the-self-compassion-test

Janet also shared a few strategies and practices to increase self-compassion. My detailed notes are below.

– Denise

=========================================================

Self-Compassion for Caregivers
November 7, 2019
Webinar Presenter: Janet Edmunson

Janet Edmunson has a masters in education and 30 years in the health education field. She cared for husband, Charles, with corticobasal degeneration (CBD), a Parkinson’s Plus disorder. She is on the board of directors for CurePSP and is an online support group moderator. She lives in South Portland, ME.

She credits Kristin Neff, PhD. This webinar is based on her book, “The Mindful Self-Compassion Workbook.”

PRESENTATION

How tough are you on yourself when something goes wrong or you aren’t at your best? This is common, especially among caregivers.

One experience of this Janet experienced was when she shared his diagnosis with her friends, against his will. She needed support, but it angered Charles that she divulged what he wanted to keep secret longer. His fury brought up feelings in Janet of self doubt and shame, even though she knew she needed her friend’s support. She thought she might have gone about getting support in another way.

Think about what the experience of compassion feels like? Think of when someone was compassionate with you told you that we all makes mistakes? We don’t always have someone there to support us, so we need to learn to comfort ourselves.

Self-compassion involves treating ourselves with care and concern when evaluating our behavior, comments and responses – just like others would have compassion and forgive our mistakes.

When we think of having compassion for others we put ourselves in their shoes and respond to them with empathy, understanding, kindness and forgiveness rather than harsh judgement. Why is it so hard to do that for ourselves?

What self-compassion is NOT:
* Self pity
* Self criticism – it is realistic, reasonable self criticism, not overly harsh.
* Self indulgent
* Self esteem
It is being kind to ourselves, as we would be kind to others.

Benefits of self-compassion:
* Decrease anxiety and depression
* Ease body’s threat response
* Bolster immune system
* Ease body’s stress response
* High levels of well being and energy
* Better mental health
Allows us to be happier and more satisfied with our situation
Allows us to be resilient and able to withstand challenges fo caregiving.

Study of U.S. Veterans: Self-reported baseline of self-compassion and again after six months. Vets who were more compassionate with themselves experienced less severe PTSD symptoms, even after combat experience.

Give yourself self-compassion when you:
* Have a difficult time
* Fail
* Notice something you don’t like about yourself

3 Components of Self-Compassion
* Kindness – vs – overly self critical
* Common Humanity – vs – Expected perfection
* Mindfulness – vs – over identification

Self Kindness is to be caring and understanding with ourselves rather than overly self critical. The offering of warmth and acceptance. We are not ignoring our pain and are being realistic, but not overly harsh.

Common Humanity recognizes humans are imperfect. Everyone makes mistakes. All humans suffer and are vulnerable. It is normal in life for things to go wrong. We are not alone and do not need to take our failings too personally. We can acknowledge our mistakes with understanding and forgiveness.

Mindfulness is being aware of one’s painful experiences that neither ignores, nor amplifies our painful experiences. We recognize the care we need to give ourselves and are aware of our feelings as they are (realistically). Mindfulness acknowledges and validates what IS, here and now, even when one is suffering. We can sit with suffering rather than move directly into problem solving mode.

Self-Compassion Test:
https://centerformsc.org/learn-msc/take-the-self-compassion-test

Examples of low self-compassion:
* I’m disapproving and judgmental about my own flaws and inadequacies
* When I’m feeling down I tend to obsess and fixate on everything that’s wrong
* When times are really difficult, I tend to be tough on myself

Examples of high self-compassion:
* I try to be loving towards myself when I’m feeling emotional pain
* When things are going badly for me, I see the difficulties as part of life that everyone goes through
* When I’m feeling down I try to approach my feelings with curiosity and openness

“Self-Compassion is a practice of goodwill, not good feelings.” – Kristin Neff, PhD

While we are trying to alleviate suffering we are not trying to replace those with good feelings, but to sit with those feelings. One may actually feel worse before feeling better. Meet worse feelings with compassion. Acknowledge the difficulty and ask yourself how you can be compassionate with yourself in that moment when emotions are at their lowest.

STRATEGIES AND PRACTICES

Relate differently to your inner critic!  Think of a time when you were critical of yourself (e.g. losing your temper with your loved one). How were you thinking of your behavior at the time? Were you harsh with yourself? Did you feel hurt and unsupported? Put yourself in the role of a wise counselor. What would they say to you in that incidence? Would they be as harsh or more forgiving?

Take Self-Compassion Breaks.  You can take a mental break any time. During the break think of ways you have been overly critical or overly harsh with yourself. Give yourself some self-compassion instead of those harsh words.

Exercise: What you would say to a friend —
* Write down something you criticized yourself harshly about.
* Walk away for a moment
* Read it and imagine that your best friend had written it
* Speak out loud what you would say to that person
* Absorb those kind words for yourself.

Exercise: Write yourself a letter —
* Write a letter to yourself in the voice of a compassionate friend, family member or your compassionate self.
* Mail it to yourself and re-read it when it arrives. Or hang onto it and take it out after some time.
* When you re-read the letter. Use it as a gauge of whether you are getting better at self-compassion.

Exercise: Keep a journal.
* Write through the lens of self compassion, being gentle with yourself and encouraging. Re-read older entries and evaluate whether your self-compassion is improving.

“In self-compassion, we hold ourselves with love – validating, soothing, and comforting our pain so that we can ‘be’ with it without being consumed by it.” – Kristin Neff, PhD

Your Action Plan.  What ritual or exercise will you adopt to give yourself more self-compassion?

“If you want others to be happy, practice compassion. If you want to be happy, practice compassion.” – Dalai Lama

QUESTIONS AND ANSWERS

Q. How do we explain to our loved ones about caring for ourselves?

A. You have no responsibility to explain that to anyone. You just need to take the time for yourself, even if it is just setting up a chair in the yard or garage or locking yourself in the bathroom for a few, just to collect yourself and take time to offer yourself a break and self compassion. Seek out friends and family for the compassion that you need. This is especially important when caring for someone with dementia who can no longer comprehend.

Q. I have PSP and need help from my caregiver, but she sometimes yells at me and tells me I don’t know what I’m doing. I am learning.

A. Try to find someone else to care for you. Talk with her about how she is talking to you disrespectfully. Tell her to ask if you want her help. Every time she begins to speak to you disrespectfully, interrupt her and remind her you want her to speak to you kindly.

Q. I’m afraid of hurting others by sharing my pain.

A. With self-compassion you are not sharing your pain. You are speaking to yourself in a kind way you would speak to someone else. So, you are not burdening others. If you have a good friend or family member, you might ask them if you can share some of the most difficult things you cope with. People want to show compassion for you.

Q. When someone pitches in to give me a break, it is hard not to micromanage them. I feel guilty for stepping back and bad about telling the helper they’re not doing things right.

A. This is a common experience. I remember, no matter how I explained that exercises for my husband needed to be done slowly, the morning caregiver always did them too fast. I had to accept that I needed to hold my tongue unless Charles was saying, “Ouch.” Sometimes, a new caregiver will show you tips and tricks you will find very useful and adopt in your own caregiving. Try to speak up just when something is really important, but if the way the helper is doing something is just not the way you would do it, hold your comments and take time for yourself. The problem with micromanaging caregivers is that they will learn not to take any initiative in your home. When that happens you don’t learn any tips and tricks from them and they don’t help you as much as they might.

 

Lewy Body Dementia – Panel and “Sue’s Story” (Nov 13, Los Altos)

There’s a local program in Los Altos, CA next Wednesday, November 13th, at 6:30pm, that some of our Lewy body dementia (LBD) group members may be interested in attending.

Sue Berghoff has Lewy Body Dementia.  Her husband Chuck Berghoff is a member of the Brain Support Network LBD caregiver support group.  They are visiting libraries and senior centers in Santa Clara County to increase awareness and discuss caregiving issues. 

As part of the event, “Sue’s Story,” a documentary about Sue’s journey, will be shown.  (For more info on the documentary, see thesuesstoryproject.com.)  Following the movie, there will be a panel discussion with a Kaiser neurologist and Brain Support Network volunteer Denise Dagan.  Denise cared for her father with LBD.  She also cared for her mother with Alzheimer’s.

The program will be held at the Los Altos Library, 13 South San Antonio Rd., Los Altos, CA 94022.

“Caregiver Burnout” (from Cleveland Clinic)

This is a good overview from the Cleveland Clinic on the topic of “caregiver burnout.” Info on prevention and a general list of places to seek help are also offered.

Robin
——————————-

my.clevelandclinic.org/health/diseases/9225-caregiver-burnout

Caregiver Burnout

Caregiver burnout is a state of physical, emotional and mental exhaustion. Stressed caregivers may experience fatigue, anxiety and depression.

What is caregiver burnout?

Caregiver burnout is a state of physical, emotional and mental exhaustion. It may be accompanied by a change in attitude, from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or if they try to do more than they are able, physically or financially.

Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones. Caregivers who are “burned out” may experience fatigue, stress, anxiety and depression.

What causes caregiver burnout?

Caregivers often are so busy caring for others that they tend to neglect their own emotional, physical and spiritual health. The demands on a caregiver’s body, mind and emotions can easily seem overwhelming, leading to fatigue, hopelessness and ultimately burnout.

Other factors that can lead to caregiver burnout include:

* Role confusion: Many people are confused when thrust into the role of caregiver. It can be difficult for a person to separate her role as caregiver from her role as spouse, lover, child, friend or another close relationship.

* Unrealistic expectations: Many caregivers expect their involvement to have a positive effect on the health and happiness of the patient. This may be unrealistic for patients suffering from a progressive disease, such as Parkinson’s or Alzheimer’s.

* Lack of control: Many caregivers become frustrated by a lack of money, resources and skills to effectively plan, manage and organize their loved one’s care.

* Unreasonable demands: Some caregivers place unreasonable burdens upon themselves, in part because they see providing care as their exclusive responsibility. Some family members such as siblings, adult children or the patient himself/herself may place unreasonable demands on the caregiver. They also may disregard their own responsibilities and place burdens on the person identified as primary caregiver.

* Other factors: Many caregivers cannot recognize when they are suffering burnout and eventually get to the point where they cannot function effectively. They may even become sick themselves.

What are the symptoms of caregiver burnout?

The symptoms of caregiver burnout are similar to the symptoms of stress and depression. They include:

* Withdrawal from friends, family and other loved ones
* Loss of interest in activities previously enjoyed
* Feeling blue, irritable, hopeless and helpless
* Changes in appetite, weight or both
* Changes in sleep patterns
* Getting sick more often
* Feelings of wanting to hurt yourself or the person for whom you are caring
* Emotional and physical exhaustion
* Irritability


How can I prevent caregiver burnout?

Here are some steps you can take to help prevent caregiver burnout:

* Find someone you trust — such as a friend, co-worker, or neighbor — to talk to about your feelings and frustrations.

* Set realistic goals, accept that you may need help with caregiving, and turn to others for help with some tasks. Local organizations or places or worship may provide support groups (either in person or online) for caregivers or family members of those suffering from diseases such as cancer or Alzheimer’s. These organizations may also provide respite care to allow the caregiver to have time away from the patient.

* Take advantage of respite care services. Respite care provides a temporary break for caregivers. This can range from a few hours of in-home care to a short stay in a nursing home or assisted living facility.

* Be realistic about your loved one’s disease, especially if it is a progressive disease such as Parkinson’s or Alzheimer’s. Acknowledge that there may come a time when the patient requires nursing services or assisted living outside the family home.

* Don’t forget about yourself because you’re too busy caring for someone else. Set aside time for yourself, even if it’s just an hour or two. Remember, taking care of yourself is not a luxury. It is an absolute necessity for caregivers.

* Talk to a professional. Most therapists, social workers and clergy members are trained to counsel individuals dealing with a wide range of physical and emotional issues.

* Know your limits and be honest with yourself about your personal situation. Recognize and accept your potential for caregiver burnout.

* Educate yourself. The more you know about the illness, the more effective you will be in caring for the person with the illness.

* Develop new tools for coping. Remember to lighten up and accentuate the positive. Use humor to help deal with everyday stresses.

* Stay healthy by eating right and getting plenty of exercise and sleep.

* Accept your feelings. Having negative feelings — such as frustration or anger — about your responsibilities or the person for whom you are caring is normal. It does not mean you are a bad person or a bad caregiver.

* Join a caregiver support group. Sharing your feelings and experiences with others in the same situation can help you manage stress, locate helpful resources, and reduce feelings of frustration and isolation.

Where can I turn for help for caregiver burnout?

If you are already suffering from stress and depression, seek medical attention. Stress and depression are treatable disorders. If you want to prevent burnout, consider turning to the following resources for help with your caregiving:

* Home health services: These agencies provide home health aids and nurses for short-term care, if your loved one is acutely ill. Some agencies provide short-term respite care.

* Adult day care: These programs offer a place for seniors to socialize, engage in a variety of activities and receive needed medical care and other services.

* Nursing homes or assisted living facilities: These institutions sometimes offer short-term respite stays to provide caregivers a break from their caregiving responsibilities.

* Private care aides: These are professionals who specialize in assessing current needs and coordinating care and services.

* Caregiver support services: These include support groups and other programs that can help caregivers recharge their batteries, meet others coping with similar issues, find more information, and locate additional resources.

* Agency of Aging: Contact your local Agency on Aging or your local chapter of the AARP for services (such as adult day care services, caregiver support groups and respite care) that are available in your area.

* National organizations: Look in a phone directory or search online for local agencies or chapters of national organizations that are dedicated to assisting people with particular illnesses, such as Parkinson’s disease or stroke. Such organizations can provide resources and information about subjects including respite care and support groups.