The ePrognosis website at UCSF (eprognosis.ucsf.edu) has various calculators for determining the prognosis of seniors. See:
www.eprognosis.org/p/
There are four top-level categories, based upon where the patient is — living in the community, living in a nursing home, hospitalized, or outpatients with advanced cancer.
This website is designed for physicians so that they can determine the prognosis and learn communication skills for discussing the prognosis with families.
This email may be of interest to caregivers.
I was trying to find some published data on the percentage of caregivers who die before their care recipients. Surprisingly, I couldn’t find anything on the Family Caregiver Alliance’s website (caregiver.org) about this but I did find this related statistic:
Researchers know a lot about the effects of caregiving on health and well being. For example, if you are a caregiving spouse between the ages of 66 and 96 and are experiencing mental or emotional strain, you have a risk of dying that is 63 percent higher than that of people your age who are not caregivers. The combination of loss, prolonged stress, the physical demands of caregiving, and the biological vulnerabilities that come with age place you at risk for significant health problems as well as an earlier death. (From “Taking Care of YOU,” Family Caregiver Alliance)
So I pulled up the reference for that statistic and found that different parts of the 1999 “Caregiver Health Effects Study” were published in various medical journals. Below, I’ve copied the abstract of the article “Caregiving as a risk factor for mortality.”
One point made in this 1999 article was also made in the “Caregiver Burnout” PBS video:
“Primary care physicians who care for…older adults may be in the best position to identify caregivers at risk. Older married couples should be evaluated as a unit, both in terms of their health status as well as the caregiving demands that exist in the home environment.”
Robin
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jama.ama-assn.org/content/282/
JAMA. 1999 Dec 15;282(23):2215-9.
Caregiving as a risk factor for mortality: the Caregiver Health Effects Study.
Schulz R, Beach SR.
Department of Psychiatry and University Center for Social & Urban Research, University of Pittsburgh, PA 15260, USA. [email protected]
Abstract
CONTEXT:
There is strong consensus that caring for an elderly individual with disability is burdensome and stressful to many family members and contributes to psychiatric morbidity. Researchers have also suggested that the combination of loss, prolonged distress, the physical demands of caregiving, and biological vulnerabilities of older caregivers may compromise their physiological functioning and increase their risk for physical health problems, leading to increased mortality.
OBJECTIVE:
To examine the relationship between caregiving demands among older spousal caregivers and 4-year all-cause mortality, controlling for sociodemographic factors, prevalent clinical disease, and subclinical disease at baseline.
DESIGN:
Prospective population-based cohort study, from 1993 through 1998 with an average of 4.5 years of follow-up.
SETTING:
Four US communities
PARTICIPANTS:
A total of 392 caregivers and 427 noncaregivers aged 66 to 96 years who were living with their spouses.
MAIN OUTCOME MEASURE:
Four-year mortality, based on level of caregiving: (1) spouse not disabled; (2) spouse disabled and not helping; (3) spouse disabled and helping with no strain reported; or(4) spouse disabled and helping with mental or emotional strain reported.
RESULTS:
After 4 years of follow-up, 103 participants (12.6%) died. After adjusting for sociodemographic factors, prevalent disease, and subclinical cardiovascular disease, participants who were providing care and experiencing caregiver strain had mortality risks that were 63% higher than noncaregiving controls (relative risk [RR], 1.63; 95% confidence interval [CI], 1.00-2.65). Participants who were providing care but not experiencing strain (RR, 1.08; 95 % CI, 0.61-1.90) and those with a disabled spouse who were not providing care (RR, 1.37; 95% CI, 0.73-2.58) did not have elevated adjusted mortality rates relative to the noncaregiving controls.
CONCLUSIONS:
Our study suggests that being a caregiver who is experiencing mental or emotional strain is an independent risk factor for mortality among elderly spousal caregivers. Caregivers who report strain associated with caregiving are more likely to die than noncaregiving controls.
Last year I came across information about a short documentary film called “Life @ the end, caring in the face of loss.” You might be able to find the 28-minute video online but local support group member Denise recommends not taking the time to watch it. She says that there’s not much new information in the video.
Instead, she shares the “good reminders” the film raises, including:
* 40% of caregivers die before care recipients
* there are a diversity of approaches to caregiving
* how difficult the transition back to a normal life can be
Here’s what Denise says about the film….
Robin
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Denise’s notes on
Life @ the end, caring in the face of loss
documentary film by Jennifer Molina & Farah Dosani, 2011
Distributed by Health News from Florida Public Media
Running Time: 28 minutes
“Love knows not its own depth until the hour of separation.” Khalil Gibran
That’s a quote from a touching video Robin asked me to review. It really reiterates what we already know about caregiving, because we are caregivers, and this is just interviews with caregivers. There’s no new information here. I wouldn’t recommend taking the time to watch it, but there are a few good reminders.
Nearly 1/4 of the population in the U.S. is engaged in family caregiving. As the title of the film denotes, it is because of love – even in the midst of mourning. But sometimes the motivation for uber-caring is to avoid any guilt after the person’s passing. You must feel you did everything you could, right? Be careful. Remember that the physical, emotional and financial stress of caregiving causes 40% to die before the person they’re caring for. If you don’t look after yourself, you may not survive them.
We commonly think of spousal caregiving or parent/child situations, but the face of caregiving is diverse. This video shares a same sex couple dealing with HIPAA rules, a family in which the ill father and his wife must care for two small children and himself simultaneously, and the impact on extended family who step in to support a primary caregiver.
Worth thinking about is that the diversity of people engaged in caregiving means there is also diversity of approaches to it, and ways of coping with the illness itself. The diagnosis, and finding how to live with it, clarifies and forever changes who each of you are. You may find yourself intensely worried about your partner and what the future holds, while they take their own therapies and symptoms in stride. You may become annoyed that a respite volunteer doesn’t do things the way you do, when you should be enjoying the respite, itself. You may need some support to handle your differences.
Finally, there will be an adjustment to life after caregiving. If its been all-consuming for you, it will leave an enormous vacuum when its over. One of the film’s subjects found that sharing with friends and family, during their journey through illness, all she had learned while caregiving, gave value to the loss of her partner. It perpetuated her identity as a caregiver but offered social interaction, support and transition back to a ‘normal’ life.
-Denise
This article is about brain donation in the UK, where a family encountered red tape. One of Brain Support Network’s missions is to figure out the red tape well in advance and overcome it. Please contact us if you’d like help making brain donation arrangements in advance.
https://www.theguardian.com/so
Gary Rose is 60 years old. He was diagnosed with multiple system atrophy (MSA) about 3.5 years ago. Symptoms began over 7 years ago. He lives in Washington state. He is the facilitator of the monthly national support group “meeting” (online meeting or conference call) for those with MSA.
In honor of March being MSA Awareness Month, he wrote this article for the CurePSP (psp.org) March/April 2012 newsletter. Amazingly for me, I can’t find anything in the article that I disagree with or think is inaccurate. It’s the best lay article I’ve read on MSA!
Gary’s article is copied below.
I am very impressed that Gary referred to the “Clinical Outcomes” research article. The article examines the clinical records of 83 people with autopsy-confirmed MSA. It’s the best source of information on “survival time” and “diagnostic accuracy” in MSA.
You can read my notes on the “Clinical Outcomes” paper here:
www.brainsupportnetwork.org/
Good job, Gary!
Robin
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www.psp.org/file_download/
Multiple System Atrophy: An Introduction
by Gary L. Rose
CurePSP Newsletter
March/April 2012, Issue 8
March is Multiple System Atrophy (MSA) Awareness month, so I am happy to introduce you to MSA. This article is a primer and will not delve too deeply into MSA.
I am a 60 year old man with MSA. I’d like to share the story of my diagnosis. I first went to the local urgency care clinic with symptoms more than seven years ago. I had been waterskiing with my adult daughter. I got up, but the water ski just didn’t feel right – it felt ‘slippery’. At the time, I was aware that I had a balance problem, but figured it was temporary – perhaps it was an ear infection. Of course, it turned out to not be an ear infection at all. I saw many healthcare professionals (including three neurologists) until my diagnosis, about three and a half years later. It is common for people with MSA to go years with no diagnosis, or to be misdiagnosed. Upon diagnosis with MSA, it is common for people with MSA or their loved ones to think further back and find MSA symptoms long before the diagnosis – that also was true for me. I remembered having problems roller skating. I had blamed it on the new skates. I sold the skates and stopped skating! Now I realize my balance had been off and that it was due to MSA.
MSA is a progressive brain disorder caused by loss of nerve cells in specific areas of the brain. The areas of the brain affected are the basal ganglia, the brain stem, or the cerebellum. Depending on the area of the brain most affected, symptoms can be stiffness, slowness and freezing (typical Parkinson’s Disease symptoms when the basal ganglia is affected); autonomic features like bladder control, low blood pressure, constipation, erectile dysfunction, body temperature regulation and loss of ability to sweat (symptoms when the brain stem is affected); and balance, coordination, and impaired speech (symptoms when the cerebellum is affected). There are two types of MSA: MSA-P, the parkinsonian type, and MSA-C, the cerebellar type. All people with MSA are thought to develop autonomic features, at some time.
The technical definition of MSA, according to Parkinson Society Canada:
“MSA was previously known as Shy-Drager syndrome, striatonigal degeneration and sporadic olivopontocerebellar atrophy. Researchers have learned that there is a common underlying cause in all three disorders, so they are now referred to as MSA. In MSA, brain cells in the affected areas shrink (atrophy). This can sometimes be seen on MRI scans. When brain tissue is examined under a microscope, structures called glial inclusion bodies can be seen; they contain a protein called alpha-synuclein. It is the presence of these inclusion bodies in the movement, balance and autonomic control centers of the brain that confirms a diagnosis of MSA.”
MSA is thought to be sporadic – that is non-hereditary. It is considered rare – about 4 or 5 people in 100,000 have it. MSA is rarer than progressive supranuclear palsy (PSP). MSA is slightly more common in men than women, but it is almost 50/50. It usually starts in a person’s 50s, although it can affect people younger and older than this. The cause of MSA is unknown. Some researchers believe that certain people can be genetically predisposed to the disease, even though a trigger still has to occur. The trigger is unknown, but suspected by some researchers to be an environmental factor of some kind. Environmental toxins and brain trauma as potential triggers are currently being researched.
MSA manifests itself differently in every individual – the speed of progression and types of symptoms vary from person to person. MSA is a progressive brain disease, but that is about all that can be said about it. Symptoms will change over time, and decline happens more rapidly than in Parkinson’s Disease.
Currently, there is no treatment to slow the progression of MSA. Each of the many symptoms of MSA should be treated by a neurologist (ideally, a movement disorder specialist), general (family) doctor, urologist, clinical nurse or physician’s assistant, speech-language pathologist, physical therapist, or occupational therapist.
After diagnosis, some patients have difficulty in finding out what the future holds. Often, the patient (or a loved one) discovers that MSA is terminal by searching the internet. Then the question becomes, “how long do I have?” Because MSA is highly individualized, it is dangerous to base one’s future (and expectations of MSA) on the anecdotal experiences of others. Unique experiences are just that – unique. For this reason, articles like “Clinical Outcomes of Progressive Supranuclear Palsy and Multiple System Atrophy can be much more helpful.” This particular study is based on a large number of MSA cases (83) and diagnoses that were pathologically confirmed. The study found that 7.9 years, plus or minus 2.8 years, is the average time of disease duration.
For more information on MSA, see these organizations/websites:
• The National Institute of Neurological Disorders and Stroke at the NIH:
www.ninds.nih.gov
• The Shy-Drager/Multiple System Atrophy Support Group, Inc.:
www.shy-drager.org
• The MSA Trust: www.msatrust.org.uk
Further reading:
• Second Consensus Statement on the Diagnosis of MSA:
www.ncbi.nlm.nih.gov/pmc/
• Clinical Outcomes of PSP and MSA:
www.brain.oxfordjournals.org/
