New Zealand Pamphlet on MSA

On the Shy-Drager online support group today, Vera posted a link to a pamphlet done by the Parkinsonism Society of New Zealand on multiple system atrophy (MSA).  The link is:

www.parkinsons.org.nz/books/msa%20pamphlet.pdf

Editor’s Note: Link is no longer active

This short pamphlet would be something you could send to family members to provide a general introduction to MSA.  Or it could be given to new caregivers.

Copied below is most of the inside page of the 2-page New Zealand pamphlet that gives details on MSA.

Robin

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What is MSA?
Multiple system atrophy (MSA) is a rare
progressive neurological disorder presenting
with similar symptoms to Parkinson’s disease.
The condition is marked by a combination of
symptoms affecting movement, blood
pressure, and other body functions; hence the
label multiple system atrophy.

Various forms of MSA
Symptoms of MSA vary from person to
person. Because of this, three different
diseases were initially described to encompass
this range of symptoms: Shy-Drager
syndrome, striatonigral degeneration, and
olivopontocerebellar atrophy.

What causes MSA?
The cause of MSA is unknown.

Symptoms of MSA?
MSA can cause a wide range of symptoms,
including:
.. orthostatic hypotension, or a significant fall
in blood pressure when standing, causing
dizziness, lightheadedness, fainting, or
blurred vision
.. male impotence
.. loss of control of bowel or bladder
.. stiffness or rigidity
.. freezing or slowed movements
.. postural instability; loss of balance; lack of
coordination
.. speech and swallowing difficulties blurred
vision
.. changes in facial expression.

Who gets MSA?
MSA usually starts between the ages of 50-60
years, although it can affect people younger and
older than this. Around 4 in 100,000 people
are affected by MSA in New Zealand. MSA
does not appear to be hereditary and is not
infectious or contagious. It is a sporadic
disorder that occurs at random.

How is MSA diagnosed?
Often symptoms are vague and diagnosis is
difficult. MSA is often mistaken for Parkinson’s,
especially in the early stages of the condition.
Diagnosis should be made by a specialist,
usually a neurologist.

What is the treatment?
Currently there is no specific treatment for
MSA. A variety of medications, including some
drugs used for Parkinson’s, and other forms of
therapy can help control the symptoms.
Treatment may focus on alleviating the
symptoms, so people with MSA could benefit
>from working with physiotherapists, speech
therapists, dieticians, continence nurses, and
occupational therapists.

What is the prognosis?
MSA is a progressive disorder, the rate of
progression differs in every person.

To the person with MSA and their
family
The diagnosis of MSA has significant impact
on those close to the patient. As the
condition progresses so does the need for
care. Carers/families may feel isolated,
frustrated and chronically tired. Infinite
patience is needed. Carers/families will
need support and should utilise support
services. Support services can be contacted
directly or referral can be made through
your doctor or health professional.

Warning for those with dementia about anticholinergics

Like Alzheimer’s Disease (AD), those with many other types of dementia have an imbalance of acetylcholine in the brain.  Anticholinergic drugs can be problematic for those with AD and non-AD dementias.

I saw this Q&A recently in my Dad’s AARP Health Care Options newsletter called fyi.

Robin

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Ask Dr. Reed ([email protected])
AARP Health Care Options fyi (newsletter)
Fall 2006

Question:  My husband has Alzheimer’s disease.  His pharmacist told me that certain medicines could further worsen his memory problems.  Any advice?

Answer:  …You are wise to take steps to ensure that your husband’s mental status is not worsened by the effects of his medicines.  As we have mentioned in previous columns, many of us become more sensitive to medicines as we age.  As a result, a variety of medicines could produce unanticipated effects that could worsen mental status and overall function.

Alzheimer’s disease is characterized by low levels of a chemical that transmits signals between nerves called “acetylcholine.”  As a result, medicines called “anticholinergic” drugs that block the effects of this nerve chemical can be especially problematic for people with Alzheimer’s disease.  Unfortunately, these drugs are very common.  They include:

* Certain antihistamines such as diphenhydramine (Benadryl)
* Certain antidepressants such as amitriptyline (Elavil) and doxepin (Sinequan)
* Medicines for bladder problems such as oxybutynin (Ditropan)
* Muscle relaxants such as carisoprodol (Soma), cyclobenzaprine (Flexeril), and methocarbamol (Robaxin)

I always say to write down the name of every medicine that you or your loved one is taking, and review this list regularly with your doctor and your pharmacist…

Warning for those with dementia about anticholinergics

Like Alzheimer’s Disease (AD), those with many other types of dementia have an imbalance of acetylcholine in the brain.  Anticholinergic drugs can be problematic for those with AD and non-AD dementias.

I saw this Q&A recently in my Dad’s AARP Health Care Options newsletter called fyi.

Robin

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Ask Dr. Reed ([email protected])
AARP Health Care Options fyi (newsletter)
Fall 2006

Question:  My husband has Alzheimer’s disease.  His pharmacist told me that certain medicines could further worsen his memory problems.  Any advice?

Answer:  …You are wise to take steps to ensure that your husband’s mental status is not worsened by the effects of his medicines.  As we have mentioned in previous columns, many of us become more sensitive to medicines as we age.  As a result, a variety of medicines could produce unanticipated effects that could worsen mental status and overall function.

Alzheimer’s disease is characterized by low levels of a chemical that transmits signals between nerves called “acetylcholine.”  As a result, medicines called “anticholinergic” drugs that block the effects of this nerve chemical can be especially problematic for people with Alzheimer’s disease.  Unfortunately, these drugs are very common.  They include:

* Certain antihistamines such as diphenhydramine (Benadryl)
* Certain antidepressants such as amitriptyline (Elavil) and doxepin (Sinequan)
* Medicines for bladder problems such as oxybutynin (Ditropan)
* Muscle relaxants such as carisoprodol (Soma), cyclobenzaprine (Flexeril), and methocarbamol (Robaxin)

I always say to write down the name of every medicine that you or your loved one is taking, and review this list regularly with your doctor and your pharmacist.

Caregiver Health (New Fact Sheet from Family Caregiver Alliance)

Family Caregiver Alliance has a good newsletter called “Update.”  The Fall ’06 issue has an interesting article on caregiver health, a topic we should all take seriously!  Here’s an excerpt:

“A large and growing body of evidence has revealed that providing care for a chronically ill person can have harmful physical, mental, and emotional consequences for the caregiver.  As families struggle to care for their loved ones, their own health is jeopardized.”

The article is about the availability of a Fact Sheet on this topic called “A Population At Risk.”  This link might work to get to the Fact Sheet:

www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1822

This link might work to get to the article:

caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1840

The article follows along with some highlights from the new Fact Sheet.

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FCA Introduces New Fact Sheet on Caregiver Health
Update, a newsletter of Family Caregiver Alliance
Fall 2006, Volume 23, No. 4

A large and growing body of evidence has revealed that providing care for a chronically ill person can have harmful physical, mental, and emotional consequences for the caregiver. As families struggle to care for their loved ones, their own health is jeopardized.

This important public health issue has broad implications. Medical advances, shorter hospital stays, limited discharge planning, and expansion of home care technology have placed increased costs as well as increased care responsibilities on families, who are being asked to shoulder greater care burdens for longer periods of time. To make matters worse, caregivers are more likely to lack health insurance coverage due to time out of the workforce. These burdens and health risks can hinder the caregivers’ ability to provide care, lead to higher health care costs and affect their own quality of life as well as that of the care receivers.

FCA has introduced a new Fact Sheet discussing this significant issue. It describes the impact of caregiving on the mental and physical health of the caregiver, summarizes research from a variety of sources, and offers recommendations from a health and public policy perspective.

Studies indicate that caregivers:

  • suffer from high levels of stress and frustration
  • show higher levels of depression
  • may exhibit harmful behaviors
  • are in worse physical health than noncaregivers
  • may have increased risk of heart disease
  • have lower levels of self-care
  • may pay the ultimate price for providing care­increased mortality.

This new publication joins the FCA library of more than 60 Fact Sheets on caregiving issues, with many translated into Chinese and Spanish. All are available at no charge on the FCA website at www.caregiver.org, or send $2 for each copy to Family Caregiver Alliance, 180 Montgomery Street, Ste. 1100, San Francisco, CA 94104.

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Excerpts from:

A Population at Risk
Fact Sheet of Family Caregiver Alliance
Fall 2006

Evidence shows that most caregivers are ill-prepared for their role and provide care with little or no support.

Caregivers show higher levels of depression.  Depressed caregivers are more likely to have coexisting anxiety disorders, substance abuse or dependence, and chronic disease.

Research shows that female caregivers (who comprise about two-thirds of all unpaid caregivers) fare worse than their male counterparts, reporting higher levels of depressive and anxiety symptoms and lower levels of subjective well-being, life satisfaction, and physical health than male caregivers.  According to one study, there is a dramatic increase in risk of mental health consequences among women who provide 36 or more hours per week of care to a spouse.

Caregivers suffer from high levels of stress and frustration.

Stressful caregiving situations may lead to harmful behaviors.  As a response to increased stress, caregivers are shown to have increased alcohol and other substance use. Several studies have shown that caregivers use prescription and psychotropic drugs more than noncaregivers.  Family caregivers are at greater risk for higher levels of hostility than noncaregivers.  Spousal caregivers who are at risk of clinical depression and are caring for a spouse with significant cognitive impairment and/or physical care needs are more likely to engage in harmful behavior toward their loved one.

High rates of depressive symptoms and mental health problems among caregivers, compounded with the physical strain of caring for someone who cannot perform activities of daily living (ADLs), such as bathing, grooming and other personal care activities, put many caregivers at serious risk for poor physical health outcomes. Indeed, the impact of providing care can lead to increased health care needs for the caregiver.

Caregivers are in worse health.  About one in ten (11%) caregivers report that caregiving has caused their physical health to get worse.
The physical stress of caregiving can affect the physical health of the caregiver, especially when providing care for someone who cannot transfer him/herself out of bed, walk or bathe without assistance. Ten percent of primary caregivers report that they are physically strained.  Caregivers have an increased risk of heart disease.  Caregivers exhibit exaggerated cardiovascular responses to stressful conditions which put them at greater risk than noncaregivers for the development of cardiovascular syndromes such as high blood pressure or heart disease.

Women who spend nine or more hours a week caring for an ill or disabled spouse increase their risk of heart disease two-fold.

Caregivers are less likely to engage in preventive health behaviors.  Caregivers’ self-care suffers because they lack the time and energy to prepare proper meals or to exercise. About six in ten caregivers in a national survey reported that their eating (63%) and exercising (58%) habits are worse than before.

Caregivers pay the ultimate price for providing care—increased mortality.  Elderly spousal caregivers (aged 66-96) who experience caregiving-related stress have a 63% higher mortality rate than noncaregivers of the same age.  in 2006, hospitalization of an elderly spouse was found to be associated with an increased risk of caregiver death.

“Strategies for Managing Home Care Workers” Article

This will be of interest only to those who use home care workers though I do think that many of the principles mentioned in the article below apply to “managing” caregivers at assisted living centers, residential care homes, and nursing homes…

Family Caregiver Alliance (caregiver.org) has a good newsletter called “Update.”  The Fall ’06 issue has an interesting article on managing home care workers.  At the end of the article, there’s a note about the availability of a Fact Sheet on “Hiring In-Home Help” and about an upcoming workshop on this topic in the winter.

This link might work to get to the “Hiring In-Home Help” Fact Sheet:
www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=407

This link might work to get to the article:
caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1837

The full article follows.

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Working Successfully with Home Care Services
Update, a newsletter of Family Caregiver Alliance
Fall 2006, Volume 23, No. 4

You are the caregiver who has finally conceded that “outside” help is needed and you’ve taken the plunge. You’ve done your homework (or not) and hired home care workers. You’ve already sorted out whether to use an agency or to hire private contractors. You may have made your decisions with reams of information or with little information at all. Paid caregivers are now in place to help care for your loved one.

Yet, the situation still does not feel under control, and you feel stressed. Your loved one might even be delighted with the caregiver, but you’re not happy about some aspects of home care. What next? Whether the care receiver lives with you or alone or with other family, you may find that several more hats have been added to the ones you’ve already been wearing. On top of being a spouse, an adult child, a loving caregiver, perhaps you now feel you need nurse’s aide skills with a smattering of R.N. and M.D. skills; accounting skills with knowledge of employer responsibilities; and supervisory skills covering personal care, household care, and the special needs of people with dementia. And you’re asking: “Isn’t this why I hired help?”

The Team

There are many possible sources of stress in utilizing home care services. Family members might provide help in various ways, but some might have no role where home care is concerned. Family members who live with the care receiver probably have a role in home care, but how they relate to paid caregivers may be uncertain. If there’s an agency involved, does the agency have a role other than providing a worker? If there’s a professional care manager, what is that person’s role? Once you determine who is on the team, then you might ask, “who wears which hats?” Maybe the team does not expect you to do anything other than hire the home care worker. Or, maybe the team expects you to do everything. Sorting these issues out early in the home care venture (or adventure) can make the plan work more smoothly.

Family Caregiver As Care Manager

A second source of stress may arise when a care plan is too vague. In the “care management” model, the care manager follows a process which includes assessment; planning; implementation; and evaluation. If you have already hired home care workers, knowingly or unknowingly you’ve completed the first three steps. It’s expected, and more than okay, to evaluate your plan as often as needed. Assessing, planning, implementing and evaluating are a continual process. Care plans need to change from time to time. They also need flexibility. Both the care receivers and the caregivers (paid or family) will have some variation in their abilities and needs from day to day.

A care plan is a written plan which outlines the paid caregiver’s duties. A written schedule is useful as well. If there is more than one caregiver, it might even be essential in order to assure that all tasks are covered.

A written care plan is particularly helpful if last minute substitute care is needed, so everyone knows the plan for the day. Because consistency in routines is useful when working with someone with dementia, the care plan is a way to provide details of those routines. The plan may even provide hints on what strategy works in getting the care recipient to cooperate with bathing or other activities.

Communication

A third to way to minimize stress in home care involves communication. A notebook in the care receiver’s home is essential if the care receiver has dementia. The caregivers can communicate with each other or with you about how the plan is working. Some paid caregivers will bring new and useful ideas to you on how to care for your loved one. Some will think that they know more than they do. Read carefully. The comments of some paid caregivers may reveal that they need more training or are not suitable at all.

The notebook is also a way to track variations in the schedule: “John was pacing all day and refused to shower.” “Ann asked for a shower today.” In addition to getting a sense of how your loved one is functioning, you will also get a sense about whether certain workers have more difficulty getting your loved one to cooperate (and whether, in general, they are skilled in taking care of someone with dementia).

The notebook will also provide you with other useful information about your loved one. When care receivers are unable to report reliably about essential bodily functions, the communication book is useful way to note whether the care receiver eats and drinks enough; whether he or she has adequate elimination; whether there are any new concerns about mobility; whether there are any skin problems; and the like.

However, the communication notebook does not replace the need to check in personally with the home care worker.

Checking In

Some of your stress may be related to having set up no plan for supervision or checking in. It may be difficult to start this practice after a problem arises. Both you and the home care worker will probably benefit from regularly scheduled meetings or telephone conversations. The communication notebook will not cover it all.

If you’ve been lucky, you’ve hired someone who stepped right in and took over without a problem. A really good home care worker will even have skills to take care of you as well as your loved one. Be prepared for the possibility of wearing the “being taken care of” hat. If your loved one lives with you, your paid caregiver may want to cook for you or clean for you. You will need to decide what you are comfortable with. The home care worker may be sympathetic about how difficult it was for you to be up all night with the care receiver. This same home care worker will want to hear positive feedback from you about the care that she is providing. This home care worker may even want to coach you about how to provide care. Yet, if some part of her care provision is a problem, this same experienced home care worker must get that message as well.

Thus, it is useful, early on in the home care venture, to set up a plan for checking in with the worker regularly, either face to face or on the telephone. It is useful to create a safe space where the home care worker can share her expertise with you and where you can share your preferences for care for yourself and your loved one.

It is also essential to sometimes be at the care receiver’s home to do “odd jobs” while the paid caregiver is there. While you are occupied with the “odd jobs,” you will have an opportunity to see and hear how the caregiver interacts with your loved one. If your loved one is responsive and involved when this caregiver is around, you may be able to overlook the fact that this caregiver is not neat about making a bed. If you know that your loved one argues with you every time you try to give a shower and you see that the caregiver has a way to gain cooperation, then you are reassured that you have hired well. On the other hand, you may overhear another paid caregiver arguing with your loved one about resistance to taking a shower. Then you must decide if that worker needs further training or has crossed a line into unacceptable behavior. In all likelihood, your loved one with dementia cannot give you reliable feedback about each paid caregiver.

You protest, “I am not a manager or a supervisor.” If you feel you truly are not a good supervisor, can anyone else on the team do this job? If you have hired through an agency, clarify whether the agency supervises its employees on a regular basis at the care recipient’s home. Determine whether the agency supervisor has the skills to supervise your loved one’s care. Is the plan for supervision detailed in the agency’s contract? If you have hired a private contractor or have hired through an agency that does not provide regular supervision, would a private care manager be useful and affordable for you? It is guaranteed that the home care plan will not run itself. If you are not a supervisor, then you’ll probably end up as chairman of the board. You won’t escape involvement unless the rest of the team bails you out somehow.

What Else Is Essential?

Many aspects of home care need close attention. There are really good home care workers and unfortunately some really unsatisfactory home care workers. However, most are neither stars nor failures. Most home care workers bring a mix of talents to the job. Your responsibility is to determine whether their strengths outweigh their weaknesses in meeting your loved one’s needs. It is useful to contract with any home care worker on a trial basis. It takes two or three weeks to determine if your loved one, the home care worker, and you are a good match for each other. Personalities and individual styles make a difference. Whether it is important to match up with other team members also needs to be determined.

The Essentials

 

  1. The home care worker should be able to make a connection with your loved one and provide companionship. If your loved one is no longer able to connect with others, does the worker demonstrate gentleness and respect in working with him or her?
  2. Tasks which involve the health or safety of your loved one should be demonstrated to the worker, be demonstrated back to you by them, and reviewed from time to time. For example, your Dad, who is a big man and is paralyzed from a stroke, transfers bed to chair in a specific way. A good worker will be able to safely maintain this routine. If your loved one uses oxygen or a Hoyer lift or a transfer bench, after demonstration by you and redemonstration by the worker, the worker should understand how to use the equipment safely and appropriately. If there are medical treatment plans to be followed (such as routine medications, daily weights, therapeutic diets) the worker should follow your instructions exactly. The worker should also follow your directions on what to do if, for any reason, the plan cannot be completed as directed.
  3. It is essential to discuss emergency procedures with the home care worker. You should ascertain the worker’s understanding of how and when to call 911. Some workers are new to this country and are unfamiliar with many aspects of day-to-day life in the United States. Do not assume that the worker knows these procedures. If your loved one has a written “Do Not Resuscitate” directive, does the worker know where it is? Does the worker know which part of the team needs to be called about the emergency? If a situation is not an emergency but is urgent, how do you want the worker to handle this? Do you want the worker to take messages from the doctor or the visiting nurse? Is your contact information up-to-date?
  4. Accountability is essential and needs to be discussed even before the start of care. If your loved one cannot be left alone, coverage for absences must be clarified. Will the agency or private contractor provide back-up? Is this acceptable to you? Sometimes the answer is yes and sometimes no. Care receivers will have problems despite the best of care. And care receivers will definitely have problems from substandard care. There are times when workers need to be fired. There are times when the worker needs to be reassured that she did the best that she could. And by all means, there are times for praise.

A Final Word

A home care plan does not totally relieve you of your involvement in your loved one’s care. The situation will still be stressful in some ways. If the plan you have developed cannot be fixed, change it. Change the duties; change the worker; get professional advice. Allow that things will not go exactly as you envision. Focus on the priorities. Is your loved one safe? Is your loved one’s health being maintained? Is your loved one connected to the home care worker? If you answer yes to these three questions, then maybe some of the rest is not so important.

For more information, see the FCA Fact Sheet, Hiring In-home Help. (Robin’s Note:  the link to this fact sheet might be http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=407.  The link given in the print version of Update is correct but the link given in the online version of the article is incorrect.)