“The Immense Value of the Family Caregiver Support Group”

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Family Caregiver Alliance (caregiver.org) is a wonderful organization focused on caregivers.  They have a blog series on the “30 Days of Caregiving.”  Day 10 focuses on the value of caregiver-only support groups.  Brain Support Network coordinates a caregiver-only support group in the San Francisco Bay Area for Lewy Body Dementia, Progressive Supranuclear Palsy, Multiple System Atrophy, and Corticobasal Degeneration.  Here’s the FCA post as to why you should join!

Robin

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www.caregiver.org/day-10-immense-value-family-caregiver-support-group

Day 10: The Immense Value of the Family Caregiver Support Group
By Lois Esobar, MSW, Family Consultant at Family Caregiver Alliance
November 10, 2011

The role of a family caregiver is difficult. Aside from taking care of their loved one, they must also continue to lead their lives, which includes working, caring for family, grocery shopping and a seemingly endless list of potentially stress-inducing responsibilities! Many family caregivers need time to vent in a safe place. Caregiver support groups allow caregivers to have that special time to be with other people who have similar issues.

Support groups are a place to receive and give support—so essential to the family caregiver. About eight years ago, I taught a caregiver class in Spanish here in San Francisco. Participants in the class appreciated having the class in their language, but they also wanted more, and so began our Spanish caregiver support group which I have facilitated for the past eight years. Many family caregivers have attended the group since its inception and have told me how much they look forward to the meetings. At the beginning of the meetings, caregivers check in with each other to see how they’re doing. Blanca, one of the members stated: “this support group is the place that I can go to and be understood. I learn so much from my group of friends.”

Time and again, caregivers have told me that the support they receive is so beneficial. Many of the participants have formed friendships and stay in contact with eachother in between the monthly meetings. Participants also look forward to the different types of food that members bring to the meetings- whether it’s Columbian, Cuban, El Salvadoran, or Mexican. Members are even planning a Thanksgiving gathering! Over the years many family caregivers have told me that they feel isolated. They often do not talk to anyone for days. Rosa says: “Sometimes I feel very isolated and alone, but when I come to the group, I know that there are others who care.”

Being in a caregiver support group allows the caregiver to focus on their needs, not only the needs of the care receiver. The meeting once a month is a gentle reminder that family caregivers need to put themselves first . . . even if only for a couple of hours each month! The caregivers in the group are caring for loved ones affected by stroke, Alzheimer’s disease, Parkinson’s disease, and Lewey Body Dementia and we’ve had guest presenters come to the group and talk about these diseases. Besides the guest speakers, I have learned from the caregivers about their stressors, challenges, and frustrations, and this has made me a better social worker.

People hear about the support group most often from word-of-mouth from a friend, but other social workers will also make referrals. Family caregivers need to be mindful of when it is time to look for more support. Some of the signs can be as follows: You feel exhausted and have less energy. You become overwhelmed easily and feel helpless. You also become easily frustrated, angry and irritable. Most importantly, you begin to neglect your own needs.

Some Resources to Help

1. “Support groups a lifesaver for caregivers” By Paula Falk. Herald Tribune. July 12, 2011. Available at www.heraldtribune.com/article/20110712/WIRE/110719938/2059/LIVING?p=1&tc=pg

2.  FCA: “Caregivers Online: Using Support Groups on the Internet”

3.  FCA: “How To Form A Support Group”

4.  FCA: “Family Caregiver Alliance’s 4 Online Support Groups”

Creative Commons License
The Immense Value of the Family Caregiver Support Group by Lois Escobar, MSW, Family Consultant at Family Caregiver Alliance is licensed under a Creative Commons Attribution-NoDerivs 3.0 Unported License.

Michigan man with MSA

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This newspaper article is about a Michigan man with multiple system atrophy (MSA).  Vera James posted this today on the ShyDrager Yahoo!Group.  (Vera is referred to in the article as a “California woman.”)

www.mlive.com/news/saginaw/index.ssf/2011/10/a_birthday_to_remember_mmr_par.html

A Birthday to Remember: MMR paramedic takes Frankenmuth man with degenerative Shy-Drager syndrome to see family as birthday treat

By Lindsay Knake
The Saginaw News
Published: Sunday, October 23, 2011, 2:00 PM

Robin

Differential diagnosis – PSP, CBD, MSA, DLB, and PD

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The recent issue of the journal Swiss Medical Weekly offers a great overview of the terms “parkinsonism” and “atypical parkinsonism.”

The article also offers very detailed explanations of how to differentially diagnose the atypical parkinsonism disorders (PSP, CBD, MSA, and DLB) and Parkinson’s Disease. The authors give three reasons why they believe it’s important to identify the subtype of parkinsonism at the time of diagnosis:

* “the prognosis can be estimated.”

* “some of the atypical features such as autonomous or cognitive problems may be targeted by pharmacological treatment”

* because “identification of atypical parkinsonism may prevent unnecessary iatrogenic harm from ineffective drugs, to which these patients typically react very sensitively.”

The full article is available in English at no charge on the Swiss Medical Weekly’s website:
http://www.smw.ch/content/smw-2011-13293/

Note that in a section on the role of imaging in the differential diagnosis of parkinsonism, an MRI is shown with the “hummingbird sign” of PSP.

I’ve copied some excerpts below as well as the abstract.

Robin

Swiss Medical Wkly. 2011 Nov 1;141.

Parkinsonism: heterogeneity of a common neurological syndrome.

Bohlhalter S, Kaegi G.
Division of Restorative and Behavioral Neurology, Department of Internal Medicine, Luerner Kantonsspital, Luzern, Switzerland

Abstract
Parkinsonism refers to a neurological syndrome embracing bradykinesia, muscle rigidity, tremor at rest and impaired postural reflexes, and involving a broad differential diagnosis.

Having ruled out secondary causes (most importantly drugs), distinguishing levodopa-responsive idiopathic parkinson’s disease (PD) from chiefly treatment-resistant and hence atypical parkinsonism is essential.

Recent clinico-pathological studies using data-driven approaches have refined the traditional classifications of parkinsonism by identifying a spectrum of subtypes with different prognoses. For example, progressive supranuclear palsy (PSP), characterised by early vertical gaze limitation and falls, probably has a milder variant with predominant parkinsonism (PSP-P) which may respond quite well to levodopa before converting to the classical disease, relabelled Richardson syndrome (PSP-RS).

Analysis of PD subcategories has shown that tremor-dominant forms are probably less benign than was hitherto thought and that in mild cases dystonia should rather be considered. In addition, life expectancy in early onset PD may be shortened.

Despite the clinical and pathological overlap of the various subtypes, appreciating the heterogeneity of parkinsonism also includes identifying non-motor features such as early autonomous or cognitive problems which are potentially amenable to pharmacological treatment. Not least, non-motor symptoms, along with postural instability, render the patient particularly vulnerable to side effects, and hence avoiding unnecessary treatment is equally important in the management of parkinsonian disorders.

PubMed ID#: 22052571

“Dementia Care Without Drugs” – did you know…?

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The “Dementia Care Without Drugs: A Better Approach for Long Term Care Facilities” conference on October 27, 2011 turned out to be well-attended. There were so many people that I don’t know if any other support group member was there??

I will go through the three presentations at some later point, and share any recommendations. In the meantime, let me share the “Did you know….” facts that were flashed on the screen during the breaks. #1 and #2 are incredible.

Robin

“Dementia Care Without Drugs: A Better Approach for Long Term Care Facilities”
Thursday 10-27-11
Organized by Ombudsman Services of San Mateo County (ossmc.org)

Did you know….

#1 – 40 skilled nursing facilities (SNFs) in California have no residents who receive antipsychotics.

#2 – 33 SNFs in California give antipsychotics to every resident.

#3 – A chemical restraint is any drug used to control behavior rather than treat a person’s medical condition.

#4 – Psychotrophics may not be given without informed consent of the patient or the patient’s legally responsible party.

#5 – Federal and state laws prohibit the use of antipsychotics in nursing homes unless it is necessary and required to treat symptoms. Non-pharmacological options must be used as a first resort.

#6 – People taking atypical antipsychotics are approximately 70% more likely to develop blood clots than those who aren’t.

#7 – Using antipsychotics to treat dementia is “off-label” and has a black box warning indicating that risk of death is doubled.

#8 – In a 2005 study, nearly one-fourth of all antipsychotic prescriptions in nursing homes did not include a clinical indication for use.

#9 – Regularized pain medication has been shown to be as effective in controlling dementia symptoms as psychotropics.

#10 – The five senses are not severely impacted by dementia and can be used to provide comfort.

POLST – Genl Info and 1/11/12 Lecture

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Some of you have seen the bright pink POLST form.  POLST stands for Physician Orders for Life-Sustaining Treatment.  The form is to be filled out by someone with a life-threatening illness and signed by his/her physician.  It’s ideal if the physician and patient discuss the options raised in the form.

CA POLST

You can get general info on the California version of this form and download a copy at this website:

http://www.capolst.org/

It’s available in many languages.  The form was recently revised. The latest version is dated 4/1/11.  All California care facilities have required this form for many years.

I plan to bring some to the next caregivers support group meeting on 12/4.

ADVANCE CARE PLANNING

You can find some useful information on talking about advance care planning for the Coalition for Compassionate Care of California website:

http://www.coalitionccc.org/advance-health-planning.php

On that page are many additional resources. I would like to highlight two of those:

* Five Wishes, fivewishes.org.  Many in our support group recommend using this advance care directive form.  My husband and I have purchased copies of this form for our family members, and discussed it with them.

* “Go Wish” cards.  I bought a couple of sets a year ago and have used them for advance care planning discussions with family members.  Let me know if you’d like to borrow a set prior to the next group meeting; I can bring a set with me if I have some advance warning!

POLST THEORY

The POLST form was developed at the Oregon Health & Science University. You can read about the POLST “paradigm” here along with a map of what states have POLST programs:

http://www.ohsu.edu/polst/

LECTURE NEXT YEAR

At the Palo Alto Parkinson’s Support Group meeting on January 11, 2012 (next year), a geriatrician at the Palo Alto Medical Clinic will be speaking about the theory behind the POLST.  An RN will be discussing how to fill out the form.  This meeting is held at Avenidas, the senior center in downtown Palo Alto, from 2 to 3:30pm.  No RSVP is required.  Anyone is welcome to attend.