Monthly Archives: February 2010

Planning for long-term care (AARP Magazine article and PDF webinar)

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There’s an article in the March/April 2010 issue of the AARP Magazine about the extreme measures some have resorted to in order to provide long-term care to their loved ones. One of those extreme measures is getting a divorce so that the spouse in need of care qualifies for Medicaid. 

You can find a link to the article here: 

http://www.aarpmagazine.org/health/love-is-not-all-you-need.html
Here are some statistics given in the article: 

“Americans who live to 65 have a 40 percent chance of entering a nursing home during their lifetime. The average stay lasts 2.5 years and costs about $175,000. In 2008, the most recent year for which numbers are available, 9 million older people required long-term care. That number is expected to reach 12 million by 2020 as the boomer population ages. Currently, only about 8 million Americans have private long-term-care insurance, leaving the government to underwrite care at an enormous cost to taxpayers.” 

That ties in with a Parkinson’s Disease Foundation webinar I listened to last month. You can find the archived version online here: 

http://event.netbriefings.com/event/pdeb/Archives/legal/


Legal Issues: Planning Ahead When You are Living with Parkinson’s 
January 13, 2010 
Faculty: Janna Dutton, J.D., Eldercare Attorney, Janna Dutton & Associates 

Ms. Dutton made the point that we should all — healthy or not — plan our own long-term care. Much better to plan your own care than to have this hard work foisted on to a family member, especially if that’s a family member that you don’t see eye-to-eye with on all aspects of your treatment wishes. She said that we should each formulate our own care plan, exploring how we’ll pay for care, health insurance, etc. As part of that, we need to know what home health aides cost, the monthly cost of an assisted living facility, and the daily cost of a skilled nursing facility in our local area.

Anticipatory Caregiver Grief

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This will be of interest to caregivers. Though this study was of 400 dementia caregivers in Indiana, I think the findings apply to all caregivers of those with neurodegenerative disorders, whether there is dementia involved or not.

Robin

http://speech-language-pathology-audiology.advanceweb.com/Article/Alzheimers-Grief.aspx

Caregiver Grief 
Advance (The Nation’s Speech-Language and Audiology Weekly) 
March 2008 

The hardest part of caring for loved ones with Alzheimer’s-type disorders is not the everyday practical challenge, but rather the emotional impact of losing the patients’ support and companionship as the disease robs them of their faculties, according to research from the University of Indianapolis. 

“You are losing and grieving while you’re providing the care, because Charlie isn’t Charlie anymore,” said associate professor Jacquelyn Frank, PhD, of the Center for Aging & Community at the university. She says the results point toward new avenues of service that could be provided by community-based support agencies. 

Dr. Frank gathered responses from more than 400 dementia caregivers around Indiana, most of them spouses and adult children of Alzheimer’s patients. She is continuing to analyze data from the survey’s 100-plus items, but she was struck immediately by the responses to this open-ended question: “What would you say is the biggest barrier you have faced as a caregiver?” 

Though the respondents’ language varied, a computer analysis found that more than 80 percent of them touched on a common theme: “letting go of the person we used to know,” as one person wrote, or “watching your loved one slip away and forget who people are.” 

The comments illustrate two previously noted but seldom-studied phenomena seen in those caring for the terminally ill. “Anticipatory grief” is the pain of losing a loved one, felt in advance of the patient’s death. “Ambiguous loss” is the discordant feeling that comes from interacting with a patient who is physically alive but no longer seems present socially or psychologically. 

It’s not surprising that such effects would be common among dementia caregivers, but this study is among the first to document their prevalence. 

“The fundamental barrier experienced by Alzheimer’s caregivers appears to be a combination of anticipatory grief and ambiguous loss, rather than hands-on care issues,” Dr. Frank said. 

The survey that is central to the study was administered at public events and through the assistance of the Greater Indiana Chapter of the Alzheimer’s Association. Most responses to the “biggest barrier” question fell into five categories, including: 

* the patient’s difficult behavior and need for hands-on care; 
* shortfalls in community and financial support; 
* difficulties in communicating with the patient, other relatives and medical professionals; and 
* the caregiver’s loss of personal time and freedom. 

The overwhelming sentiment among the respondents, however, involved the personal grief and loss they were experiencing in the midst of their many practical concerns. Dr. Frank was surprised that many respondents sent personal notes and letters along with the questionnaire, noting that they appreciated the opportunity to bring their feelings into the open. 

Dr. Frank said she hopes the study results can be used to help design new support and intervention programs for dementia caregivers. Even friends and family don’t always understand that dementia poses unique challenges, she says, and that adds to the sense of isolation and hopelessness many caregivers already feel. 

“These people need to know that feelings of grief and loss are normal, and that other caregivers face the same emotional difficulties,” she said.

Several months ago, someone on an MSA-related online support group posted two links on anticipatory grief: 

http://www.caregiver.com/articles/general/anticipatory_grief.htm

http://www.strengthforcaring.com/manual/grief-death-and-dying-end-of-life-care/what-is-anticipatory-grief/

Clinical aspects in frequent fallers with PSP

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This is fascinating German research comparing frequent fallers and infrequent fallers with a clinical diagnosis of PSP. The authors state:

“It is concluded that the occurrence of falls in PSP seems strongly associated with the deterioration of bulbar function, but not relevantly with typical parkinsonian features like rigidity and bradykinesia. The decreased ability to deal with distraction of attention under a dual-task situation points to a relevant impact of cortical and subcortical dysfunction on the frequency of falls.”

“Frequent fallers also showed an increased probability of an altered walking pattern with shortened step lengths and increased cadence under a dual-task situation.”

Frequent falling was not associated with disease duration.

Of the 26 cases studied, “13 patients suffered from Richardson’s syndrome (11 of them were frequent fallers, 2 were infrequent fallers), and 9 suffered from PSP-Parkinsonism (4 were frequent fallers, and 5 were infrequent fallers).” (One of the clinical characteristics of Richardson’s syndrome is unexplained falls as a primary symptom.) Four patients could not be assigned to a sub-type.

The “PSP Rating Scale” was used as part of the clinical investigation. These researchers described that scale as follows: “This scale comprises 28 items in six categories: daily activities (by history), behavior, bulbar, ocular motor, limb motor and gait/midline, and has been shown to be sensitive to disease diagnosis and progression.” The researchers found the PSP Rating Scale better at assessing subtle cognitive deficits in PSP than the MMSE or the FAB (Frontal Assessment Battery).

You can also find links to the scale itself and to Dr. Golbe’s research article about the scale) here:
http://forum.psp.org/viewtopic.php?t=2468 (see my post from 11/19/09)

I glanced over the full article today. I found these statements about postural instability very clear:

“It is obvious that postural instability cause falls. Postural stability may include sensory organization, a motor adjustment process, and the background tone of the muscles. Cognitive processes such as attention and learning are also important resources required for postural stability. In PSP, the visual system (due to gaze palsy) and motor adjustment processes are known to be defective, and cognitive slowing is regularly and early observed.”

The abstract is copied below. It’s quite good, compared to other abstracts.

Robin

Movement Disorders. 2010 Feb 3. [Epub ahead of print]

Clinical and dual-tasking aspects in frequent and infrequent fallers with progressive supranuclear palsy.

Lindemann U, Nicolai S, Beische D, Becker C, Srulijes K, Dietzel E, Bauer S, Berg D, Maetzler W.
Department of Clinical Gerontology, Robert-Bosch-Hospital, Stuttgart, Germany.

Progressive supranuclear palsy (PSP) is a rare neurodegenerative disease with no sufficient therapeutic options to date. Falls are the most devastating feature. The causes of these falls are not well understood.

To test the impact of PSP-associated motor and cognitive features on falls, 26 PSP patients were prospectively recruited and divided into frequent fallers (> one fall/month, 18 patients) and infrequent fallers (</= one fall/month, 8 patients). Further parameters were assessed by clinical investigation and biomechanical gait and balance analysis with and without dual-task paradigms. Physical activity was measured through an ambulatory device.

Frequent fallers scored higher on the total PSP rating scale and the subscales “history,” “mental,” “bulbar,” “supranuclear ocular motor,” and “gait/midline exam” but not on disease duration, the subscale “limb exam,” the UPDRS motor score and the sway analysis.

Frequent fallers also showed an increased probability of an altered walking pattern with shortened step lengths and increased cadence under a dual-task situation.

It is concluded that the occurrence of falls in PSP seems strongly associated with the deterioration of bulbar function, but not relevantly with typical parkinsonian features like rigidity and bradykinesia. The decreased ability to deal with distraction of attention under a dual-task situation points to a relevant impact of cortical and subcortical dysfunction on the frequency of falls.

PubMed ID#: 20131396 (see pubmed.gov for this abstract only)

Very small trial of Exelon in PSP (for dementia)

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This is a small German study of 5 PSP patients with dementia. These patients were given rivastigmine (Exelon is the brand name in the US) for 3-6 months. The researchers “found a slight improvement in specific cognitive function that may justify further controlled studies.”

Exelon is an acetylcholinesterase inhibitor (AChEI). The two other AChEIs are Aricept and Razadyne. Both Aricept and Razadyne are available in generic form. Unlike Aricept and Razadyne, Exelon inhibits two forms of choline — acetylcholine and butyrylcholine. Exelon is the only AChEI that is FDA approved for use in Parkinson’s Disease Dementia. All three AChEIs are approved for use in Alzheimer’s Disease.

When our local support group began, I occasionally heard about PSPers trying Aricept. It didn’t seemed to do any good. In the last year or so, I’ve heard about a couple of PSPers trying Exelon.

Robin

Alzheimer’s & Dementia. 2010 Jan;6(1):70-74.

Rivastigmine for the treatment of dementia in patients with progressive supranuclear palsy: Clinical observations as a basis for power calculations and safety analysis.

Liepelt I, Gaenslen A, Godau J, Di Santo A, Schweitzer KJ, Gasser T, Berg D.
Center of Neurology, Department of Neurodegeneration, and Hertie Institute of Clinical Brain Research, University of Tübingen, Tübingen, Germany.

Cognitive decline and dementia are present in about 50% of patients with progressive supranuclear palsy (PSP). Based on the known involvement of the cholinergic system in PSP patients, and because rivastigmine, in contrast to other cholinesterase inhibitors, inhibits both acetylcholinesterase and butyrylcholinesterase, we discuss clinical observations of five patients suffering from PSP and dementia who were all treated with rivastigmine over a period of 3 to 6 months.

We found a slight improvement in specific cognitive function that may justify further controlled studies. A calculation of sample size revealed that a study on the effect of rivastigmine in PSP should include about 31 patients to detect a significant effect. In subtests, meaningful results can be obtained with even lower numbers (five patients for a verbal fluency test, and 14 patients for a logical memory task).

PubMed ID#: 20129321 (see pubmed.gov for this abstract only)