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:

Considering Caregiving
Huffington Post
by Stacey Gordon, Consultant, Care Manager, Advocate, Mediator


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:



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.

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 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:



“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:

The full post is copied below.



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.



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.