“Grit, Grace, and Resilience: The Story of Successful Caregiving” Webinar, Aug 30

Family Caregiver Alliance is hosting a webinar for caregivers to those with dementia this Wednesday, August 30th, 11am to noon PT. Details are:

Grit, Grace, and Resilience:
The Story of Successful Caregiving

Caring for someone with dementia is a demanding and enduring challenge. It takes our best selves and all the support we can get from those in our communities. This webinar is a reflection on ways those who provide care can sustain their health and well-being throughout the caregiving journey.

Objectives:
* Learn why accepting the situation is important.
* Identify three tools to help balance safety and independence.
* Learn healthy coping strategies.

Speaker: Sarah Dulaney
Sarah Dulaney earned a Master of Science degree in gerontological nursing at UCSF and is certified as a Geriatric Clinical Nurse Specialist by the American Nurses Credentialing Center. For the past 14 years, Sarah has worked with adults with cognitive impairment in community, long term care and hospital settings.  The focus of Sarah’s work is on improving care delivery and support for patients with dementia and their caregivers in whatever setting they may live. She finds joy in “sharing the moment” with people with dementia.

When: Wednesday, August 30, 11 a.m. to 12 noon (PT)

Cost: No charge

Contact: Calvin Hu, [email protected], (415) 434-3388 ext. 313

Registration

“How to Inspire a Dementia Patient to Shower” (Bob DeMarco)

This blog post may be of interest to those struggling to get someone with dementia to shower.

Many in the Alzheimer’s community will know of Bob DeMarco, who cared for his mother with AD. This July 2017 article is from Bob’s website, The Alzheimer’s Reading Room. Of course the suggestions offered apply to all types of dementia, not just Alzheimer’s. The full text is copied below.

There’s also an 11-minute podcast, which is basically Bob reading this article. On the YouTube page of the podcast, Bob lists several resources that “deepen the content” of the podcast/article. I’ve copied below those additional resources.

Robin

—————

www.alzheimersreadingroom.com/2017/07/how-to-inspire-a-dementia-patient-to-shower.html

How to Inspire a Dementia Patient to Shower
The Alzheimer’s Reading Room
By Bob DeMarco
July 17, 2017

Getting an Alzheimer’s patient to shower can be difficult. In order to accomplish this mission you will need to learn how to be a guide, how to use bright light, and how to use positive reinforcement.

Thousands of caregivers and dementia professionals have used these techniques and they work.

My mother usually resisted when I asked her to take a shower – for years. When she occasionally said something other than NO, I looked to the heavens as if it was a reward.

It took me quite a long time to figure out what to do and how to properly motivate my mom so she would take the shower without resistance.

 

1. Constant positive reinforcement about the positive effects of being clean.

My mother would usually take her shower around 3 in the afternoon. I gave up trying to get her to take her show in the morning because she wouldn’t do it.

During the course of the day I would start setting the stage for the shower early in the morning and throughout the day.

An hour before her shower, I would take my shower and then come out with my head still wet and my face clean shaven and start extolling how great it felt to be clean.

I would get my mother to touch my face and show her how smooth it was. As she was touching my face I would say – smooth a few times.

Eventually she would say smooth, or “smooth as a baby’s butt”. This would give both of us a good laugh.

I would also get her to touch my wet hair. Then I would say – clean. I would say clean a few times as she touched it.

I would then tell her how great it felt to be clean. Positive reinforcement about the virtues of being all nice and clean.

Please Note – This was designed to fix the idea of a shower in her brain. All of this was designed to set the stage for Dotty’s shower that was coming soon.

I was trying to set a pattern leading up to the shower, and then a specific pattern when it came time to take the shower.

Establishing patterns is one of the only ways I discovered that worked when it came to establishing consistent behavior with someone living with Alzheimer’s disease.

I am convinced that trying to do the same thing, at the same time, every day is very helpful in Alzheimer’s caregiving.

 

2. Prior to the shower I tried to make sure my mother was sitting in bright light.

I would sit her next to a window – in the kitchen usually do the trick. I learned that bright light can be mood altering when used effectively with dementia patients.

Put it this way – bright light, bright mom.

Before shower time, I always talked to and engaged my mother. I would resist the temptation to sneak up on my mother and then announce – time to take a shower. This doesn’t work, and it never worked for me.

Singing can be a good way of engaging a dementia patient and getting their attention. I learned my mother was always willing to sing Shine on Harvest Moon.

It became even easier after we obtained our repeat parrot Harvey. Now the three of us could sing together. This usually delighted Dotty.

I understand that Alzheimer’s patients often say NO when asked to take a shower. Sometimes my mother would say, “I already took my shower”. This was amusing because she was still sitting in her pajamas.

Rule to live by: Never correct an Alzheimer’s patient if they say they already took their shower.

Rule to live by: Never try to explain to them the importance of taking a shower – like good hygiene.

Ever hear the saying “loose lips sink ships”? Explanations and lots of words will sink your caregiving effort every time.

 

3. When it comes time to take the shower think of yourself as a guide.

You are going to guide your loved one to the shower by taking their hand. Of course, you will already have given them a nice smile, and received a nice smile back before you start to take action.

The weapons in your caregiver arsenal: the smile, your hand, and the most important of them all – positive reinforcement.

Here is one simple way to get someone living with Alzheimer’s to take a shower in my opinion. I learned this as a freshman in college in Psychology 101. Let’s call this Pavlov’s dog and the shower.

How to use the zinger. The shower must always lead to something the dementia patient wants or enjoys. In the case of Pavlov’s dogs they rang a bell when the dogs would eat. Eventually, they would just ring the bell and the dogs would salivate. This is known as a conditioned response.

When I got mom up for the shower I wouldn’t say a word. I would stick my hand out and wait for her to take it. And away we would go.

When she asked where we were going I would hold her hand and walk her toward the bathroom.

At this point I fire in the zinger. After you take your shower mom you will get a nice snack.

I usually said potato chips because they were her favorites. Positive reinforcement before the shower, BIG positive enforcement after the shower. For many of you, ice cream or chocolate should do the trick.

Two points here. One, mom gets the positive reinforcement after every shower, the reward so to speak – the potato chips or ice cream.

Two, I am involved with mom all the way. I don’t say you need a shower and then wait for her to go take the shower. I assist her right up to the door of the shower.

You have to be actively involved with a person living Alzheimer’s in everything they do. Once you get the hang of being actively involved you will find and learn – that it gets easier to guide your loved one and get them to do what you would like them to do.

Resist the temptation to be a parent. You are dealing with an adult with dementia, not a child.

Resist the temptation to be the boss. Instead be a guide and lead with a smile and your hand, palm turned up. Offer your hand to your loved one.

Always think positive and endeavor to find new and better ways to introduce positive reinforcement into the equation.

If you want your loved one to take a shower every day establish a pattern. Make sure the communication and activity leading up to the shower are positive and that you are engaged with the patient before guiding them.

Extol the virtues of being clean and how wonderful it feels. Get all happy about it – show your enthusiasm.

Make sure the immediate aftermath of the shower is positive. Use potato chips, or ice cream, or a trip out the door (this really worked well for me).

Don’t worry about being so happy you can’t see straight. Once you get this technique down you will be so happy you won’t believe what it feels like.

Don’t worry, you can do it. Might take some practice and patience, but it will happen.

 

List of resources on the YouTube page for the 11-minute podcast:

www.youtube.com/watch?v=myAG_rGIli4&feature=youtu.be

The following articles deepen the content available in the Podcast.

5 Tips How to get an Alzheimer’s Patient to Shower – http://bit.ly/RIKk4Q

Dementia care meet meanness with kindness – http://bit.ly/2u3qt4y

How to Change Patterns of Behavior in Alzheimer’s and Dementia Patients – http://bit.ly/2cfoh56

The Importance of Bright Light in Dementia Care – http://bit.ly/aoYGZg

Should you correct someone with dementia – http://bit.ly/2u3qt4y

How the Smile is a Powerful Communication Tool in Dementia Care – http://bit.ly/2fOBP59

Alzheimer’s Care Be a Guide – http://bit.ly/2j5ej5v

The Best Way to Find Solutions to the Problems that Caregivers Face Each Day – http://bit.ly/alzheimers-answers

 

The need to distinguish between Alzheimer’s and other dementias

This is a long article in a recent LA Times about whether it’s important to distinguish between Alzheimer’s and other forms of dementia. Understandably, the focus is still on Alzheimer’s Disease.

Here are some excerpts:

* “Alzheimer’s disease is the most feared and most common form of dementia, accounting for between 60% and 80% of all dementia cases diagnosed. But at least seven other forms of dementia, and dementia linked to the movement disorder Parkinson’s disease, can cause loss of memory, reasoning, judgment and the ability to speak, comprehend and care for oneself.”

* “Doctors and insurers, including the federal government, which administers Medicare, are asking some variants of the same questions: If an effective test, which costs between $3,000 and $5,000 a shot, can diagnose dementia early, and distinguish Alzheimer’s from other forms of dementia, should it be recommended to patients with cognitive concerns and routinely covered by their insurance? Would it make patients’ lives better, or lower the cost of their care?”

* “At the Alzheimer’s Assn. International Conference in London last week, researchers reported their preliminary findings from a trial that is testing the impact of diagnostic testing for Alzheimer’s disease on nearly 19,000 Medicare beneficiaries … with a diagnosis of either ‘mild cognitive impairment’ or atypical dementia. The study … set out to find out whether knowing — getting the costly test that would offer either confirmation or reprieve — would change the way that patients with cognitive troubles are treated, or the way that they plan their lives. The preliminary results suggested it did. After getting the results of a PET brain scan to detect and measure amyloid deposits, which are the key hallmark of Alzheimer’s disease, roughly two-thirds of the subjects saw their medication regimens changed or were counseled differently by their doctors about what to expect. That new information may have guided family caregivers in planning their own futures, or prodded patients to make financial decisions and power-of-attorney assignments sooner. Some who learned that they did not have Alzheimer’s discontinued medications that can have unpleasant side effects. Others learned they do have Alzheimer’s and decided to enroll in clinical trials that will test new drugs.”

* “A second study presented in London analyzed data from several studies, and found that in a large population of research participants with cognitive concerns, brain amyloid PET scans led to a change in diagnosis in approximately 20% of cases.”

* “To the estimated 16 million Americans living with some form of cognitive impairment, telling the difference could make a significant difference. Dementia forms with different origins progress differently (or sometimes not at all). They respond best to different medications, and will come to require different levels of care and treatment. Some (though not Alzheimer’s) can even be reversed with treatment. Being able to distinguish which form of dementia a patient has should help doctors and caregivers to make better choices.”

Here’s a link to the full article:

www.latimes.com/science/sciencenow/la-sci-sn-alzheimers-transcranial-magnetic-stimulation-20170726-story.html

Science Now
Is it Alzheimer’s or another dementia form? Why doctors need to distinguish and how they might do so
by Melissa Healy
LA Times
July 27, 2017

Robin

 

“Caregiving Is Hard Enough. Isolation Can Make It Unbearable.”

This article from yesterday’s New York Times “New Old Age” Blog is about caregiver isolation. Here are key excerpts from the article:

* Like so many caregivers, [Ms. Sherman-Lewis] has discovered that along with the abandoned career, the hands-on tasks, the medical scheduling, the insurance tussles and the disrupted sleep, she faces another trial: social isolation.

* “Caregiving is done with a lot of love and affection, but there’s a lot of loss involved,” said Carey Wexler Sherman, a gerontologist at the University of Michigan Institute for Social Research. “People talk about friends disappearing, about even family members not wanting to be involved. It’s a lonely business.”

* Sometimes, caregivers isolate themselves.

* Yet a habit of avoiding others — or watching them avoid you — collides with a growing body of research showing how damaging isolation and loneliness can be. They are associated with a host of ills, including heart disease and stroke. Among older people, isolation is linked to depression, even higher mortality. Lonely old people, Dutch researchers have found, are more apt to develop dementia.

* “The support is what leads to less stress, less depression, better health and delayed nursing-home admissions,” Dr. Mittelman said. Interestingly, her team has found that “instrumental support,” in which others actually help with tasks, has less impact than emotional support. “Having someone outside who is paying attention and who cares is more important,” she said.

* “Don’t invite me for lunch — you know I can’t go,” Ms. Sherman-Lewis said. “Just bring a pizza and a bottle of wine and come by.”

The full article is worth reading:

www.nytimes.com/2017/08/04/health/caregiving-alzheimers-isolation.html

Health | The New Old Age
Caregiving Is Hard Enough. Isolation Can Make It Unbearable.
by Paula Span
The New York Times
Aug. 4, 2017

Robin

‘Mom, I didn’t steal your dentures’: Coping when dementia turns to delusion

What a wonderful title for a newspaper article!

This article is about the hallucinations and delusions occurring in the context of dementia. The article specifically mentions Lewy body dementia but note that hallucinations and delusions can occur in moderate to severe Alzheimer’s Disease. (As you may know, the ONLY way at present to confirm a diagnosis is through brain donation. Let Brain Support Network help you make those advance arrangements for your loved one.)

In the article, a nurse gives four tips for managing problems:

* Maintaining social contact
* Good sleep hygiene
* Music to soothe agitation
* Providing choice

Here’s a link to the article:

www.philly.com/philly/health/health-news/mom-i-didnt-steal-coping-when-dementia-turns-to-delusion-alzheimers-psychosis-depression-20170709.html

Health
‘Mom, I didn’t steal your dentures’: Coping when dementia turns to delusion
by Stacey Burling, Staff Writer
Updated: July 6, 2017 — 11:02 am EDT
The Philadelphia Inquirer

Robin

 

“How to Choose a Dementia Care Facility. Avoid My Mistakes.”

This is a very helpful article about choosing a dementia care facility.  The author is North Carolina-based Donna Plunkett St. Clair, whose husband was diagnosed with dementia in 2010 at age 59 and then with Lewy Body Dementia (LBD) in 2015 at age 65.  Donna shares the mistakes she made in choosing the wrong care facility…twice.

Here are the ten lessons Donna learned:

1.  Start investigating potential facilities NOW.
2.  Learn how your loved one’s care will change as he/she declines.
3.  Learn how “problems behaviors” are defined and ask about examples of what might lead to a resident being forced to leave the facility.
4.  Know what you can afford.
5.  Assess if the facility is using innovative designs.
6.  Ask if the resident can safely go outside.
7.  Ask about safety.
8.  Inquire about staffing levels, activities, and supervision for holidays, evenings, and weekends.
9.  Ask if residents are encouraged to stay hydrated, and are offered second helpings and snacks.
10.  Check service levels and quality when the facility least expects you.

These lessons are detailed in the article here:

www.lewybodydementia.ca/dementia-care-facility-choice-avoid-mistakes/

How to Choose a Dementia Care Facility. Avoid My Mistakes.
By Donna Plunkett St. Clair
Posted to Lewy Body Dementia Canada
May 29, 2016

Robin

 

“My caregiving is wearing me out. What can I do?”

This is a post from last year about dealing with caregiver burnout.  Suggestions shared include:
* ask for help
* eat healthy foods
* increase exercise
* have a good attitude
* stay connected to your support system
* understand your strengths and weaknesses
* be proactive

The post is from the Benchmark Blog, which is a blog run by Benchmark Senior Living, senior living communities in the northeast.  See the blog post below.

Robin


www.benchmarkseniorliving.com/news-room/dear-jayne-my-caregiving-is-wearing-me-out-what-can-i-do

“Dear Jayne, My caregiving is wearing me out. What can I do?”
October 15, 2016
by Jayne Sallerson, 20 year veteran in senior care
Benchmark Blog

Dear Jayne
I love my mom dearly but some days can be such a challenge. She has Alzheimer’s, and I’m afraid of the toll it’s taking on my health, my family, on everything! What can I do?

~~~~~

It’s not easy, we understand. When every day can be so different, it’s natural for a caregiver to take a back seat to their loved one and put themselves second.

The truth is, caregiving can be tough work. The emotional and physical demands involved can strain even the most resilient person. But you need to take care of yourself. After all, the healthier a caregiver is the better able they are to support others.

“You can do just about anything as a caregiver, but you can’t do everything,” Galyn Corneby advises. Galyn speaks from experience—she is a long-time Benchmark associate and winner of our 2016 Compassionate Caregiver Award. She shared a few of her tips.

“It’s ok to ask for help when you need it.” Everyone needs help sometimes. It can be as simple as having someone help pick up the groceries, make a meal, or stop by for a visit.

“Eat good, healthy foods.” Avoid grab-and-go mealtimes. If you’re going to build resiliency, good nutrition is one of the keys. Try to eat foods that have a lot of vitamins and minerals in them, such as fruits, vegetables, whole grains and low-or nonfat dairy. Our VP of Dining Experience Guy Hemond, who is also an award-winning chef, suggests these few fast and healthy snacks (benchmarkseniorliving.com/news-room?article=recipe-of-the-month-fudgy-fruit)

“Up your exercise.” What? Who has time!?! But here at Benchmark, we like to call it ‘Multi-tasking Fitness’. While sitting at your desk or paying bills, put a workout band around your knees or ankles and work out your legs and hips! One of our associates actually does leg lifts and crunches while lying in bed watching the evening news. Our compassionate caregiver Gail Corneby told me she takes mini exercise breaks during her day. Me? I put appointments on my calendar to exercise—with myself!

Having a good attitude, staying connected to your support system, understanding your strengths and weaknesses, and being proactive are just a few of the ways you can take better care of yourself. It’s largely about recognizing that you do have choices, and the importance of making the ones most likely to support you in your caregiving role.

Let me give you two more places to turn. Our website (benchmarkseniorliving.com) and blog (benchmarkseniorliving.com/news-room) have some great articles on caregiving. Be sure to also check out the Alzheimer’s Association website (alz.org) and their tip sheet on “Important Self-Care for Alzheimer’s Caregivers.”

Until next time,
Jayne

 

“Dying Words” (beautiful story from WBUR, June 13, 2017)

This is a beautiful story about words and an idea for those of us who have loved ones losing the ability to speak.

Alice Saunders had a close relationship with her father Arpiar Saunders.  When Alice was in her 20s, her father started mixing up words — pina colada for pinata, for example.  He was diagnosed with frontotemporal degeneration, which can affect speech.  “As his vocabulary shrank, Arpy would endlessly repeat the words he still had.”  Eventually, “there were just two full phrases that her father could still say.  One was ‘proud to be your dad,’ and the other was ‘I love you.'”  Alice said:  “I’d get voicemails sometimes that was just like, ‘I love you, I love you, I love you, I love you, I love you’ for five minutes straight. That’s what he could say at the end.”  After her father died, Alice’s boyfriend gave her a flash drive of all of her father’s voicemails over the last year.

Perhaps those of us who have loved ones losing the ability to speak can find an idea here — record your family member speaking before their voice disappears.  I have a few hand-written notes from my father that he made before he lost the ability to write; those are very precious to me.

The full article is available online.  Plus there’s a six-minute audio story that aired on June 13, 2017 on WBUR (Boston) at the link:

www.wbur.org/kindworld/2017/06/13/kind-world-39-dying-words

Kind World #39: Dying Words
June 13, 2017
WBUR
by Erika Lantz

Robin

NYT story about adjusting to neurological decline

Though this New York Times article is about a former baseball pitcher Jim Bouton with cerebral amyloid angiopathy (a type of dementia), I think the article is of general interest.  The end of the article is about the wife and family identifying what the husband can still do, and adjusting around that.  This applies to all of us coping with neurological decline.

Here’s an excerpt:

His wife Paula “Kurman calls his condition a pothole syndrome: Things will seem smooth, his wit and vocabulary intact, and then there will be a sudden, unforeseen gap in his reasoning, or a concept he cannot quite grasp.  … In her work with brain-damaged children, Kurman said, her boss would tell her to think about what remains, not what is lost. It is a lesson she applies now. Her husband can still make her laugh, still make her think. … And he can still pitch.  ‘You need to learn that the person is still that person, and you have to focus more on what he can do, rather than what he can’t do,’ she said. ‘And then you adjust.'”

Here’s a link to the full article:

Robin

“Dementia patients may die sooner if family caregivers are mentally stressed”

This news article is a description of UC Berkeley research into the “high stakes of caregiver stress.”

According to researchers, “[patients] with dementia may actually die sooner if their family caregivers are mentally stressed. … [Compared] to patients who were cared for by relatives in fairly good mental health, patients tended by family members in poor mental health died, on average, about 14 months sooner.”

“While the study does not provide definitive causal or directional evidence for the earlier death of patients whose caregivers are in poor mental health, ‘it highlights the mutual influence both parties’ mental and physical states have on one another, and the extraordinarily high stakes that are involved,'” the lead researcher said.

“The study notes that poor mental health in caregivers can affect patients’ lives in a variety of ways. It can reduce the quality of patient care by raising the risk of neglect or abuse, weaken the patients’ immune systems by compromising social bonds between the caregiver and patient, or transmit negative emotions directly to patients through a phenomenon known as emotion contagion, in which one person in a relationship absorbs the emotional responses of the other.”

Mental health issues include depression, anxiety, social isolation and frustration.

The full article can be found here:

news.berkeley.edu/2017/06/26/caregiver-mentalstress/

Mind & Body, Research, Science & Environment
Dementia patients may die sooner if family caregivers are mentally stressed
By Yasmin Anwar, Media Relations
Berkeley News
June 26, 2017

 

Robin