How to get loved one to accept help?

Stacey Gordon is a geriatric care manager.  She recently posted about how to get a loved one to accept caregiving assistance. Here are excerpts from that post:

The word “caregiving” is intensely evocative, and identifying a loved one’s need for care can be emotionally stirring. … We may have watched someone fall and pick themselves up, stubbornly refusing to either ask for or accept our help, and feel an increasing sense of defeat at our inability to give our loved ones the help they need.

In my role as geriatric care manager, I am often contacted after loved ones watch an older adult struggle and reject their offer of help. Concerned clients ask “how do I get my loved one to accept the kind of care I think is good for her, or any care whatsoever?” This very question in most cases, is misconstrued. Regardless of how compromised you feel your loved one might be, and no matter how much of a challenge their stubbornness might pose, you must be patient. Your job is to initiate and then revisit a conversation about care. The conversation should begin with the type of care they think is best for them, while offering your opinion in a way they can hear. You can then, through discussion, and with patience, strive for a resolution all will embrace.

One caveat: If you have cause for concern about a loved one in a life threatening situation, posing an imminent danger to themselves or others, clearly a medical professional should be notified immediately, to recommend emergency care.

By no means should your loved one be in the position of having care foisted upon them, as long as they are able to make an independent decision. Indeed, long after we may question a loved one’s judgement, it may well be possible for that person to make a viable decision for care, on their own terms. It behooves us to respect an older adult’s lifetime of experience, self determination, dignity and expectations for the next phase of their life. It’s our job to think about making decisions for care with them, and if needed, support them to enact their plan.

Here’s a link to the full post if you’d like to read all of it:

www.huffingtonpost.com/stacey-gordon/mushroombarley-soup-and-o_b_2348296.html

Considering Caregiving
Huffington Post
by Stacey Gordon, Consultant, Care Manager, Advocate, Mediator
12/21/2012

Robin

Criteria for the diagnosis of corticobasal degeneration – important new article

This is an important new article on corticobasal degeneration. This is a revision of the diagnostic criteria for CBD. This article looks to be an amalgam of thinking of movement disorder specialist (such as our friend Irene Litvan, MD) and memory disorder specialists (such as our friends at UCSF Memory & Aging Center, including Adam Boxer, MD). It looks like compromises were made to keep both sides happy.

Researchers looked at 267 autopsy-confirmed cases of CBD, trying to glean overlaps in clinical features.  Four phenotypes emerged for CBD:

  • corticobasal syndrome (CBS)
  • frontal behavioral-spatial syndrome (FBS)
  • nonfluent/agrammatic variant of primary progressive aphasia (naPPA)
  • progressive supranuclear palsy syndrome (PSPS).  Note that this type can only be diagnosed as possible CBD.

This research and the update of the diagnostic criteria is only possible through brain donation.  If you would like to make arrangements for your own brain donation or a family member’s brain donation, start with Brain Support Network.

The abstract is copied below.

The full article is available at no charge here:

www.ncbi.nlm.nih.gov/pmc/articles/PMC3590050/

Robin

———————-

Neurology. 2013 Jan 29;80(5):496-503.

Criteria for the diagnosis of corticobasal degeneration.

Armstrong MJ1, Litvan I, Lang AE, Bak TH, Bhatia KP, Borroni B, Boxer AL, Dickson DW, Grossman M, Hallett M, Josephs KA, Kertesz A, Lee SE, Miller BL, Reich SG, Riley DE, Tolosa E, Tröster AI, Vidailhet M, Weiner WJ.

Abstract
Current criteria for the clinical diagnosis of pathologically confirmed corticobasal degeneration (CBD) no longer reflect the expanding understanding of this disease and its clinicopathologic correlations. An international consortium of behavioral neurology, neuropsychology, and movement disorders specialists developed new criteria based on consensus and a systematic literature review. Clinical diagnoses (early or late) were identified for 267 nonoverlapping pathologically confirmed CBD cases from published reports and brain banks.  Combined with consensus, 4 CBD phenotypes emerged: corticobasal syndrome (CBS), frontal behavioral-spatial syndrome (FBS), nonfluent/agrammatic variant of primary progressive aphasia (naPPA), and progressive supranuclear palsy syndrome (PSPS). Clinical features of CBD cases were extracted from descriptions of 209 brain bank and published patients, providing a comprehensive description of CBD and correcting common misconceptions. Clinical CBD phenotypes and features were combined to create 2 sets of criteria: more specific clinical research criteria for probable CBD and broader criteria for possible CBD that are more inclusive but have a higher chance to detect other tau-based pathologies. Probable CBD criteria require insidious onset and gradual progression for at least 1 year, age at onset ≥ 50 years, no similar family history or known tau mutations, and a clinical phenotype of probable CBS or either FBS or naPPA with at least 1 CBS feature. The possible CBD category uses similar criteria but has no restrictions on age or family history, allows tau mutations, permits less rigorous phenotype fulfillment, and includes a PSPS phenotype. Future validation and refinement of the proposed criteria are needed.

PubMed ID#: 23359374 (see pubmed.gov for the abstract)

“Details of the Heart” (requests made by a person with health issues)

One of our local support group members, Marty, sent me information on this blog post today.  Within this blog post is a list called Details of the Heart.  This list was created by a geriatric care manager, Stacey Gordon, for a client named Ann.  Ann used this list in screening potential candidates for a home care aide.  Ann needed to hire an aide to help her in the last year of her life.  The list addresses what was important to Ann in an aide and caregiving companion — “open communication, sensitivity, fairness and patience.”

“Ann so related to the list of ‘Details of the Heart’ she recited it aloud to potential caregivers to gauge their reaction. Once she hired her caregiver, she revisited the details throughout the caregiving process.”

Many of the nine items on the “Details of the Heart” list are
appropriate for anyone — whether they are hired aides, family
members, or friends — who wants a caring relationship with another person who may have health issues.

I’ve copied the list below from Stacey Gordon’s blog post.  I think
that’s the key to the blog post but if you’d like to read the entire
post, see:

www.huffingtonpost.com/stacey-gordon/end-of-life-conversation-caregivers_b_2547547.html

Robin


 

“Details of the Heart”
by Stacey Gordon
Posted: 01/30/2013 6:56 am
Huffington Post

1. Please make eye contact with me, and look at me often. Don’t ever make me feel invisible.

2. Please ask me before you touch my body, especially in sensitive places.

3. Please have a tremendous amount of patience with me.

4. Please tell me when you are worried about me, and why. Don’t tell others first.

5. Please help me keep my mind active. Talk to me, read to me, engage me on topics that interest you and ask me about my interests.

6. Please remember that I am an adult, and ask me to choose how to plan my days.

7. Please call me if you will be late, or if you are sick and help me
by calling one of our substitute caregivers. Remember that I cannot be left alone.

8. Please know that I will respect your privacy and I would like you to respect mine.

9. Please know that I thank you for caring for my body and my heart.

 

Easy Trick to Distinguish PSP from PD

Tim Rittman, a clinical research fellow in neurology in the UK, recently posted to The PSP Association’s blog about his recent paper on using cognitive testing to differentiate Parkinson’s Disease (PD) and progressive supranuclear palsy (PSP).  Here’s a link to his blog post:

www.pspassociation.org.uk/2013/01/easy-trick-to-distinguish-psp-from-parkinsons-disease/#more-6112

The full post is copied below.

Robin

——————–

Tim Rittman
Post to The PSP Association’s Blog

I’m pleased the JNNP have published my paper on cognitive testing in Parkinson’s disease (PD) and two rarer but important diseases that can be confused, Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD), though a little surprised no one had done the study before now. The headlines are:

  • a short test of verbal fluency distinguishes extremely well between Parkinson’s disease and Progressive Supranuclear Palsy
  • it’s not so useful for distinguishing Parkinson’s disease from Corticobasal Degeneration, or between Progressive Supranuclear Palsy and Corticobasal Degeneration
  • the ACE-R test changes over time in Parkinson’s and Corticobasal Degeneration, but not so much in Progressive Supranuclear Palsy

If you want more details, either read the paper or get in touch! Even though it’s not the main chunk of my thesis, I enjoyed writing this paper. It gets to the heart of a challenging clinical problem (and deals with the fun part of being a neurologist!), that of making the correct diagnosis in similar diseases. It uses relatively simple tools, in the Revised Addenbrooke’s Cognitive Examination and verbal fluency scores, so should apply to most clinic or hospital situations.

Parkinson’s can be a tough disease to deal with, but usually responds well to treatment for many years. Giving a diagnosis of PSP or CBD has much great implications for patients and relatives in terms of the lack or treatment response, shorter prognosis, and challenging cognitive and motor symptoms.

To those who know PSP and CBD well, there is nothing particularly surprising in our results, although the high significance levels and good performance of the tests will hopefully give some confidence in existing knowledge. My hope is this will raise awareness among those less familiar with the disorders, and enable earlier recognition of PSP and CBD. JNNP has a wide readership among clinicians, so I’m really pleased they’ve published it. I may be optimistic, but if anyone finds the paper useful because they’re struggling with differential diagnosis, then I’d love to hear from you!

Short summary of Lewy body dementia (Johns Hopkins, 1-21-13)

This short summary of Lewy Body Dementia was in a Johns Hopkins Health Alert recently.  If you sign up to receive these health alerts, note that Johns Hopkins uses the email list to try to sell its publications, and the same alert can be sent out multiple times over a few-month period.

Accurate diagnosis of LBD is quite difficult.  Of the brain donation
cases I’ve handled, LBD is found upon brain investigation less than half the time.  Locally, the diagnostic accuracy rate is much higher! LBD commonly co-occurs with Alzheimer’s pathology and other pathologies, which makes an accurate diagnosis while the person is alive very difficult.

Robin

—————————————————————

www.johnshopkinshealthalerts.com/alerts/memory/Lewy-Body-Dementia_6446-1.html

Talking About Lewy Body Dementia
Johns Hopkins Health Alert
Posted in Memory on January 21, 2013

Lewy body dementia is a form of dementia that accounts for 5 to 15 percent of all dementia cases. Lewy bodies — named for Frederick Lewy, the physician who first identified them in 1912 while working in the laboratory of Dr. Alois Alzheimer — are tiny spherical deposits of a protein called alpha-synuclein that are found in the brains of patients with Lewy body dementia. The presence of Lewy bodies throughout the brain disrupts the brain’s normal functioning.

There is considerable overlap between Lewy body dementia and two other disorders: Alzheimer’s disease and Parkinson’s disease. In Lewy body dementia, patients experience a loss of dopamine-producing nerve cells similar to that seen in Parkinson’s disease. They also lose acetylcholine-producing nerve cells, similar to what occurs in Alzheimer’s disease.

Patients with Lewy body dementia often experience cognitive problems associated with Alzheimer’s disease, such as memory loss, spatial impairment and language difficulties. They may also develop parkinsonian symptoms, such as muscle rigidity, a blank facial expression, soft voice, tremor, poor balance and gait disturbances. Some patients initially diagnosed with Parkinson’s disease later go on to develop a dementia that closely resembles Lewy body dementia.

Certain symptoms of Lewy body dementia help distinguish it from
Alzheimer’s disease and other forms of dementia. For example, unlike people with Alzheimer’s disease, Lewy body dementia patients often experience detailed and extremely vivid hallucinations early in the illness. People with Lewy body dementia also tend to show marked fluctuations in their cognitive functioning, often several times a day. In addition, they tend to fall asleep easily during the day and have restless, disturbed sleep with behavioral acting out.

Recognition of these symptoms leads to an accurate diagnosis of Lewy body dementia. A correct diagnosis is particularly important because the medical management of patients with Lewy body dementia presents special challenges. The drugs that are normally used can aggravate other problems and cause potentially serious adverse reactions. In particular, antipsychotic (neuroleptic) drugs can provoke dangerous side effects, including a return to psychosis, and must be used cautiously, if at all. In addition, levodopa, a drug normally used to treat parkinsonian symptoms, may worsen hallucinations, so its dosage needs to be carefully adjusted in patients with Lewy body dementia.

Eight “cures” to reduce suffering and cost of dying (SJMN, 12-29-12)

Lisa Krieger has a wonderful series in the San Jose Mercury News on the cost of dying (mercurynews.com/cost-of-dying).  Local support group member Barbara, who was quoted in one of the earlier articles as a Lewy Body Dementia caregiver, sent me a link to the final article in the series.  It was published at the end of 2012.

Lisa Krieger says that

“Our conversation has taught us that, yes, there is a cure for the cost of dying in America. It will reduce suffering and expense…”

She lists eight “cures”:

Cure 1: Take charge of our deaths by putting wishes in writing

Cure 2: Involve entire communities in commitment to planning

Cure 3: Encourage doctors to talk more frankly about choices

Cure 4: Pay doctors to help patients decide what’s best for them


Cure 5: Avoid costly care that won’t prolong or improve life


Cure 6: Offer better comfort care to patients in their final days


Cure 7: Pay families to help at home instead of using hospitals


Cure 8: Broaden use of comfort care through Medicare, insurance

In Cure 1, the author points out that:

“While 82 percent of Californians say it is important to have end-of-life wishes in writing, only 23 percent of us have done so, according to a poll by the California HealthCare Foundation.”

Hopefully you’ve all — whether you have a neurological disorder or not — have completed an advance care directive!

In response to an earlier article in the series, local support group member Richard encouraged everyone to consider purchasing long-term care insurance as a way of covering some of the expenses of are. Caregivers may want to consider such insurance for themselves.

Here’s a link to the article about the eight “cures”:

www.mercurynews.com/bay-area-news/ci_22278023/cost-dying-discovering-better-way-final-days

Cost of Dying: Discovering a better way for final days
San Jose Mercury News
By Lisa M. Krieger 
Posted:   12/29/2012 04:00:00 PM PST
Updated:   01/04/2013 08:27:57 PM PST

Robin

Institute of Medicine – “Transforming End-of-Life Care”

Local support group member Maureen sent me this article from the January 11th San Jose Mercury News.  The Institute of Medicine, an arm of the National Academy of Sciences, is holding meetings on “transforming end-of-life care.”  According to the article’s author, the goal is to “review federal policy, financing and hospital practices in an effort to improve the end-of-life experience in America.”  Eventually, the IOM’s recommendations may become law or federal agency policies.

For the SJMN article, see:

www.mercurynews.com/breaking-news/ci_22348648/institute-medicine-will-recommend-ways-improve-end-life

National Institute of Medicine will recommend ways to improve end-of-life care
San Jose Mercury News
By Lisa M. Krieger 
Updated:   01/11/2013 07:04:11 PM PST

If you are interested in learning more about the hearings or
submitting comments (which will be made public), check out:

www.iom.edu/Activities/Aging/TransformingEndOfLife.aspx

Robin

Bad News about Both PSP/CBD Experimental Trials in 2012

I wanted to be sure everyone saw the very bad news that came out in 2012:  the two experimental drug trials in PSP — Davunetide and Nypta.

Hopefully the search will continue for a medication that can slow the progression of PSP and CBD — both tauopathies.  And hopefully cures can eventually be found for these diseases.

Adam Boxer, MD, the neurologist at UCSF’s Memory & Aging Clinic and the principal investigator of the Davunetide trial, has spoken forcefully in the past about pharmaceutical companies using PSP — rather than Alzheimer’s Disease — as the testing ground for tau-modifying agents.  I hope the failure of Davunetide doesn’t mean that Dr. Boxer’s theory has been disproven.

A small number of people in our local support group participated in the Davunetide trial; UCSF was the lead institution.  (A total of 313 people participated worldwide.)  And a couple of our group members participated in the pilot trial of Davunetide done at UCSF in PSP, CBD, and FTD.  I don’t believe anyone in our group participated in the Nypta trial.  (UCLA was the nearest institution participating.)  I would like to thank those who participated.  Without their sacrifice, we would not have known whether this medication was effective or not.

Anecdotal evidence in at least one local participant suggested
Davunetide was effective.  I guess that was placebo effect?

The manufacturer of Davunetide, Allon Therapeutics, had a phone call with investors the day the results were announced in mid-December 2012. Janet Edmunson, the chair of CurePSP, listened to a recording of the call.  One point that she passed on — that was not in the press release — was that perhaps not enough of the medication was given. Would a higher dose work?  Allon said the results are being further analyzed to “determine if there is any evidence of an effect or explanation for the absence of an effect.”

Apparently, the bad news about the worldwide Nypta trial came out in early 2012.  UCLA was the nearest participating medical center.  I don’t think Dr. Boxer mentioned this failed trial at the October symposium.  Noscira, the manufacturer of Nypta (tideglusib), said that the experimental medication failed in PSP but a trial in Alzheimer’s Disease would continue in 2012.  No results of that have been announced yet.

This seems to be the path of most medical research — some steps
forward and lots of steps back (or sideways).  We’ll just have to keep hoping for a breakthrough as the researchers continue to plod away.

If you’d like to read the details on the bad news, check out:

Allon Therapeutics press release regarding Davunetide
www.allontherapeutics.com/2012/12/allon-announces-psp-clinical-trial-results/
Excerpt:  “The study had co-primary outcome measures: the Progressive Supranuclear Palsy Rating Scale (PSPRS), and the Schwab and England Activities of Daily Living (SEADL).  Data analysis failed to detect an effect on either the PSPRS or the SEADL.”

Noscira CEO letter regarding Nypta (tideglusib)
www.noscira.com/noscira.cfm?idIdioma=2&idArticulo=97

Robin

“3 Questions to Ask About Assisted Living Memory Care Communities”

This post will be of interest to those who may be looking at memory care facilities for their loved ones with dementia.  (This is the name given to care facilities that specialize in caring for those with dementia.  Since the most common dementia is Alzheimer’s Disease, and AD has prominent memory issues, these facilities use the word “memory care” rather than “dementia care.”)

Steven Russell, BSN’s treasurer, recently came across a column in the Huffington Post in December 2011 on three broad questions to ask memory care facilities:

1- how good is the quality of care?
2- how rich and individualized is the activity program?
3- how well-designed and maintained is the place?

For each broad question, there are many sub-questions provided.  The article was written by Marguerite Manteau-Rao, the Palo Alto-based social worker who is a long-time BSN friend.

Here’s a link to the article:

www.huffingtonpost.com/marguerite-manteaurao/memory-care-communities_b_1155043.html

3 Questions to Ask About Assisted Living Memory Care Communities
by Marguerite Manteau-Rao, LCSW
Huffington Post
Posted 12/21/11

Robin

 

 

Contemplative Caregiving (NYT, 1-11-13)

This article is from a recent “New Old Age” blog in the New York Times.  It’s about contemplative caregiving — an approach advocated by Jennifer Block, who is a former director of the well-known Zen Hospice project in San Francisco.  Here are a few highlights from the short transcript provided by the NYT of the interview with Ms. Block:

“People are for the most part unprepared for caregiving. They’re either untrained or unable to trust their own instincts. They lack confidence as well as knowledge. By confidence, I mean understanding and accepting that we don’t know all the answers ­ what to do, how to fix things.”

“Also, we live in a fast-paced, demanding world that says don’t sit still — do something. But people receiving care often need most of all for us to spend time with them. When we do that, their mortality and our grief and our helplessness becomes closer to us and more apparent.”

“Another skill is to become aware of how much we receive as well as give in caregiving. Caregiving can be really gratifying. It’s an expression of our values and identity: the way we want the world to be. So, I try to teach people how this role benefits them. Such as learning what it’s like to be old. Or having a close, intimate relationship with an older parent for the first time in decades. It isn’t necessarily pleasant or easy. But the alternative is missing someone’s final chapter, and that can be a real loss.”

“I think every caregiver needs to have their own caregiver — a
therapist or a colleague or a friend, someone who is there for them and with whom they can unburden themselves.”

You can find the full NYT article here:

newoldage.blogs.nytimes.com/2013/01/11/taking-a-zen-approach-to-caregiving/

New Old Age: Caring and Coping
New York Times
Family Relationships
Taking a Zen Approach to Caregiving
By Judith Graham
January 11, 2013, 6:52 am

For further info, check out Ms. Block’s website (jenniferblock.org) and her new SF-based organization, Beyond Measure School for Contemplative Care (carebeyondmeasure.org).

Robin