“Learning to Be Good Enough” as a caregiver (NYT)

I really enjoy “The New Old Age” blog on the New York Times (nytimes.com). Last Thursday’s entry was about the concept of NOT being a perfect caregiver but being a good caregiver. This is one of the best articles on caregiving I’ve ever read.

The blogger says: “There is an old saying about not letting the perfect drive out the good, a notion that I think is essential to providing sensible and loving care to an aging parent and maintaining one’s sanity during the process.”
Here’s a link to the New York Times blog post:
http://newoldage.blogs.nytimes.com/2009/01/22/th-good-enough-daughter/

Learning to Be Good Enough
By Jane Gross
January 22, 2009, 12:16 pm
New York Times

The New York Times post refers to a blog titled “A Good Enough Daughter” by Sara Myers. Here’s a link to that post:

“A Good Enough Daughter” blog
by Sara Myers

http://www.silverplanet.com/blog/good-enough-daughter

You can read a slightly different version of this explanation by Sara Myers here:

“I Can’t Make Everything OK”
By Sara Myers

http://www.silverplanet.com/blog/good-enough-daughter/i-can-t-make-everything-okay/5611

All of these are worth checking out!

Getting Support – Go through your list of friends, etc.

Although this advice for caregivers was written by someone whose husband has Alzheimer’s Disease, I think her advice on going through your list of friends (and identifying who can do something, who can listen, and who prefers to continue on as if nothing has happened) is a useful approach for all caregivers. This is perhaps a good exercise for those diagnosed with a neurodegenerative disorder too.

Robin


http://www.thealzheimerspouse.com/CaregivertipsHowe.htm

Alzheimer’s Association
SUGGESTIONS FROM A CAREGIVER – Support, Part 1
By Elizabeth (Betsy) Howe, M.B.A

Dealing with dementia in a loved one can be overwhelming at times, or most of the time. Not only do we have our own lives to conduct, we are trying to do the best we can for our loved one. All the time we are also grieving the loss we both are undergoing. You about get used to one level of effort and things change and get harder.

As caregivers we are advised to reduce stress, keep a life of our own not involved with caregiving, exercise, and eat properly. The focus of this article is reducing stress. The caregiver’s key to reducing stress and keeping THEIR sanity is …. support support support …and the most important…SUPPORT.

Many articles tell us that if we don’t take care of ourselves we can, and do, become statistics ourselves. We die earlier than our non-caregiving peers, or worse yet, before the loved one we are caring for.

One of the useful things I’ve been advised to do is make a list of all my friends, family and acquaintances. Next to each name I indicate what role they can play in reducing my stress level through support in three categories:

1. ‘D’ goes next to the names of those who can be counted on to ‘Do’. There are and will be things we inevitably will need done or need help doing or leaning to do ourselves.

2. ‘L’ goes next to the names of those who can be counted on to ‘Listen.’ We need people we can talk to, even if we end up saying the same things over and over. I suggest, if possible, you find one or two you can literally call 24/7.

3. ‘C’ goes next to the names of those who prefer to ‘Continue on’ as if nothing has happened. They prefer not to talk or hear about the nasty things going on in our lives and the life of our loved one. BUT they are willing to continue to be our friend. These people are essential for those times when we just want to ‘get away’ and pretend to be like everyone else (non-caregivers).

Think about those you know in all avenues of your life – work, professional associations, family, friends, church. Be sure to include all people you know. You might be surprised at the number of potential support people you have. Don’t forget to think about those who know/ knew your loved one. Often they will be happy to support your loved one by supporting you.

Keep your list in a notebook or on your computer or electronic planner so it’s easy to find and add to. If you are extremely lucky you will have one or two people who are all three- D, Land C! Just try not to ‘bum out’ any one person. If they can support you in more than one category, it’s easy to do. You are in this for the long haul and need ‘D’, ‘L’ and ‘C’ support long term.

I am finding that those of us actively involved in caregiving truly CARE for each other as well as our loved one. Sometimes helping someone else is a stress relief for me! Be open to new friendships with those you meet through various support groups, such as the Lincoln Alzheimer Association Young Onset Support Group that meets twice a month and has activities periodically.

Don’t forget the Alzheimer’s Association 24/7 Helpline, 1-800-272-3900, or [email protected] as someone to ‘Listen’ but also provide helpful suggestions. I prefer the phone if I have immediate issues involving my loved one and want to know how to handle something that’s going on right now. They have trained personnel with whom you can speak.

Even if you have a great local counselor or psychologist with whom you are working, the local professionals aren’t generally available 24/7. If you are looking for something that is not so immediate, the email address is a good bet.

Alzheimer Type Pathology in the PSP Brain (Mayo Jax)

It is common upon brain autopsy to find that PSP patients also have Alzheimer type pathology (ATP) in the brain. This Mayo Jax study below that looked into what relationship there is between Alzheimer type pathology and PSP. The conclusion: “These results strongly argue that ATP in PSP represents independent disease processes even when present in the same brain.”

Robin

International Journal of Clinical & Experimental Pathology. 2009;2(4):399-406. Epub 2008 Dec 20.

Cortical Alzheimer Type Pathology Does Not Influence tau Pathology in Progressive Supranuclear Palsy.

Oshima K, Dickson DW.
Department of Neuroscience, Mayo Clinic Jacksonville, Florida.

Alzheimer disease (AD) is characterized by numerous senile plaques (SP) in addition to widespread neocortical neurofibrillary tangles (NFT). Some elderly have pathologic aging (PA), which is characterized by numerous SP composed of diffuse amyloid deposits with few or no NFT confined to the limbic lobe. Both AD and PA represent a range of Alzheimer type pathology (ATP).

Some cases of progressive supranuclear palsy (PSP) have concurrent ATP, but the relationship between ATP and PSP has not been addressed.

In this study, a consecutive series of PSP cases were divided into three groups according to the degree of concurrent ATP – pure PSP, PSP/PA and PSP/AD.

Braak NFT stage was significantly greater in PSP/AD compared with both PSP/PA and PSP.

Among the pathologic variables studied in middle frontal, superior temporal and motor cortices, there were no differences between PSP and PSP/PA except for SP. In PSP/AD, there was greater neuronal tau pathology (pretangles, NFT and neuropil threads) in middle frontal and superior temporal cortices, probably a reflection of ATP since there was no comparable increase in PSP-related glial tau pathology in these regions.

The APOEvarepsilon4 allele frequency was significantly higher in PSP/PA and PSP/AD than in PSP. These results strongly argue that ATP in PSP represents independent disease processes even when present in the same brain.

PubMed ID: 19158937

Dr. Gott: Seroquel not advised for elderly

I know some of you read Dr. Gott. Here’s another MD’s opinion about Seroquel (quetiapine). Of course your MD’s opinion may be different!

http://www.montereyherald.com/health/ci_11525837

Ask Dr. Gott: Seroquel not advised for elderly
Peter Gott
Updated: 01/22/2009

Dear Dr. Gott: Please give your opinion on Seroquel being prescribed to a patient with dementia. I’ve heard it is a dangerous drug when given to the elderly, as it can cause death. Should this drug be given long term?

Dear Reader: Seroquel is a medication used to treat conditions such as bipolar disorder. It is not approved for behavioral problems related to dementia. Black-box warnings for elderly patients with a dementia-related psychosis indicate an increased risk of serious side effects, including pneumonia, heart attack, stroke and death.

The product is available in doses from 25 milligram to 300 milligram tablets or capsules by prescription only. When the drug is prescribed for the elderly, the recommended initial dose is 25 milligrams daily. Contraindications are noted for people with a history of hypertension, stroke, thyroid disorder, diabetes, high cholesterol, seizures or heart attack.

Side effects include fever, sweating, uncontrolled muscle movements, severe headaches, visual and gait disturbances, and more. Be sure to speak to the prescribing physician should any symptoms occur.

Seroquel XR extended-release tablets contain black-box warnings because of an increased mortality rate in elderly patients with dementia. XR is indicated for treatment of schizophrenia, a name given to a group of mental disorders in which a patient loses touch with reality and is unable to think or act in a rational manner. The condition is often treated with tranquilizers and specific drugs to lessen the degree of depression.

Extended-release tabs are not recommended for the elderly. Adverse reactions include dry mouth, dizziness, orthostatic hypotension, constipation, a feeling of sedation and more.

There are a number of interactions with this drug. Be sure to advise your physician of medications you are taking to ensure there will not be a negative response should he or she choose to prescribe Seroquel XR.

The long-term effectiveness (more than six weeks) has not been fully evaluated. All prescribing physicians should re-evaluate patients on a regular basis.

You are correct that the drug can be dangerous for elderly patients with dementia. I can only hope the prescribing physician fully researched all the options before prescribing it and that the dose is a reasonable one.

All patients regardless of age who are treated with antidepressants or antipsychotics for any condition should be monitored carefully for negative alterations in behavior, especially during the early stages of a new medication. Family and caregivers must be observant and should report those changes accordingly.

If you continue to have unanswered questions and have the legal right to be involved with the care of the individual in question, return to the prescribing physician with a list and request answers. If you are dissatisfied, seek a second opinion.

To give you related information, I am sending you a copy of my Health Report “Consumer Tips on Medicines.” Other readers who would like a copy should send a self-addressed, stamped No. 10 envelope and $2 to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title.

Write to Dr. Gott c/o United Media, 200 Madison Ave., 4th fl., New York, N.Y. 10016.

Special SPECT to diagnose CBD, PSP, and PD (French research)

PSP and CBD folks –

SPECT functional imaging is not widely available in the US. I think it is available in only a handful of medical research facilities. This was addressed in a Q&A* in May ’08 during a Parkinson Disease Foundation conference.

Some recently-published French research looks at the results of SPECT scans in 62 people with clinical diagnoses of CBD, PSP, and PD. The researchers were using a special kind of SPECT, called an HmPaO-SPECT, to differentiate between these three disorders. The researchers concluded that this type of SPECT scan can distinguish between these three disorders, quite accurately. “The frontal medial, temporoparietal and parietal regions were the most discriminant.”

The abstract follows. I won’t be getting this full article because it’s in French!

Robin

Revue Neurologique (Paris). 2009 Jan 14. [Epub ahead of print]

[Classification of parkinsonian syndromes via factorial discriminant analysis of brain SPECT data.]
[Article in French]

Kreisler A, Defebvre L, Duhamel A, Lecouffe P, Dujardin K, Steinling M, Pasquier F, Destée A.
Service de neurologie et pathologie du mouvement, hôpital Roger Salengro, Lille, France.

INTRODUCTION: The objective was to assess the value of single photon emission computerized tomography (SPECT) and factorial discriminant analysis (FDA) in the differential diagnosis of Parkinson’s disease (PD), progressive supranuclear palsy (PSP), and corticobasal degeneration (CBD).

PATIENTS AND METHODS: Sixty-two patients with clinical diagnoses of either CBD, PSP or PD were studied using brain HmPaO-SPECT. Thirteen pairs of regions of interest (ROIs) were drawn on the slices located 50mm and 90mm above the canthomeatal plane. Twenty-six uptake indices and 13 asymmetry indices were determined. FDA was performed in order to determine whether or not the patients could be classified into the correct clinical group on the basis of SPECT data alone. The most discriminant parameters were used to generate two predictive scores, which were tested in a second group of 15 patients.

RESULTS: FDA of all 39 variables correctly classified all the patients. A subset of 10 variables was used to build predictive scores, which correctly classified 90% of PD patients, 100% of PSP patients and 86% of CBD patients. When tested in the validation group of 15 patients, these predictive scores correctly classified 87% of the individuals. The frontal medial, temporoparietal and parietal regions were the most discriminant.

CONCLUSION: Using SPECT data alone, this study enabled us to distinguish between PD, PSP and CBD in patients with clear clinical presentations of the diseases in question. This novel, statistical approach provides reliable information. However, a prospective study dealing with de novo parkinsonian syndromes will be necessary.

PubMed ID#: 19150099 (see pubmed.gov)

* Question: Why are SPECT scans not available in the US?
Answer: Because of corporate changes. GE bought Amersham. Amersham wanted to bring another type of SPECT agent to market. It’s been found that the drug that GE started to bring to market in Europe is easier to use. So it got slowed down bringing this agent to the US. GE is talking to the FDA about using European trial data.