“Life Lessons From Dad” (Wall Street Journal)

This article is about a son and his wife caring for the son’s parents in the son’s home.  The parents were in their 80s.  The father had a diagnosis of dementia.  The author says:  “Caring for an ailing parent is a life-changing event. Beyond the sadness and suffering, the experience can teach caregiving children a lot about toughness, perseverance and especially love.”

On the Wall Street Journal website (online.wsj.com), there is a 4-minute video interview of the author.  The video can be watched at no charge, after an advertisement.

Here’s a link to the full article about “life lessons from dad”:  (the full article is viewable only if you make a payment to the WSJ)

https://www.wsj.com/articles/life-lessons-from-dad-caring-for-an-elderly-parent-1403886423

Life Lessons From Dad — Caring for an ailing parent is a life-changing event; beyond the sadness and suffering, the experience can teach us a lot about toughness, perseverance and, especially, love
By Dave Shiflett
28 June 2014
The Wall Street Journal

Robin

A revolution in health care is coming (The Economist)

This interesting lead article in the Economist magazine (economist.com) is about how we will all become our own doctors, leading a health care revolution.

Here’s an excerpt:

Better flow of medical data “is likely to bear fruit in several ways. One is better diagnosis. … A second benefit lies in the management of complex diseases. … Patients can also improve the efficiency of their care. … A final benefit of putting patients in charge stems from the generation and aggregation of their data.”

And a full link to the article:

www.economist.com/news/leaders/21736138-welcome-doctor-you-revolution-health-care-coming

“What is Anosognosia and How Does it Impact You as a Caregiver?”

There’s a good post on today’s The Caregiver Space (thecaregiverspace.org) blog about anosognosia. This is the term used when a person with dementia is unaware he/she has dementia. This has nothing to do with denial.

The author offers several guidelines to caregivers. I especially like the last one — Foregiveness is important for all concerned.

Here are the guidelines:

* Remember they genuinely don’t know they have dementia.
* Don’t try to convince them they have deficits.
* Understand why anosognosia occurs.
* Don’t expect the person to stick to a promise or agreement.
* Try to encourage their independence as much as possible within safe boundaries.
* Give them a couple of choices rather than leaving things open ended.
* Continue to assess.
* Honesty may not always be the best policy for someone with dementia.
* Forgiveness is important for all concerned.

The full blog post is copied below.

Robin



thecaregiverspace.org/what-is-anosognosia-and-how-does-it-impact-you-as-a-caregiver/

What is Anosognosia and How Does it Impact You as a Caregiver?
by Iris Waichler
The Caregiver Space
Feb 1, 2018

One of the toughest scenarios caregivers have to face is when they are taking care of someone who has dementia and is unaware of it. This condition can occur with people who have Alzheimer’s or other forms of dementia, strokes, or brain disorders. This condition is called anosognosia. This presents numerous challenges for both the caregiver and the person they are caring for. What are the most useful strategies you can employ as a caregiver in this type of situation? Here are some useful tips to offer guidelines:

Remember they genuinely don’t know they have dementia.
Keep in mind that person genuinely does not understand their abilities and limitations. It is a medical condition. They are not playing games or in denial about their ability to function. Try not to cast blame in this situation. Be as patient and understanding as you can reminding them your goal is to help keep them as safe as possible and maintain a reasonable quality of life given the medical issues you are faced with.

Don’t try to convince them they have deficits.
Trying to get a person with this condition to understand they have specific limitations will just cause you to get angry and frustrated. They are unable to comprehend or accept what you are saying. They will become defensive and possibly angry or agitated. It will only heighten conflicts in your relationship and hinder your role and ability as a caregiver.

Understand why anosognosia occurs.
Those who do research in this area report this condition occurs where there is damage in the frontal lobe area of the brain. This is the area of the brain the includes functions like problem solving, and higher functions like abstract reasoning and spacial orientation. The New York Times reports that “estimates up to 42 percent of people with early Alzheimer’s Disease have symptoms of anosognosia.”

Don’t expect the person to stick to a promise or agreement.
Trying to bargain with people with this diagnosis is not useful. They will not remember what they agreed to or that you even had a discussion about it. Visual cues may help. This means writing things down to reinforce the message you are trying to deliver. Making an environment as safe as possible is also a good strategy. For example, having a coffee maker that automatically turns off rather than relying on someone with memory issues to remember.

Try to encourage their independence as much as possible within safe boundaries.
It is very tempting to just jump in and do things for someone who needs help or may not remember all the steps involved in completing a task. Try to be realistic about what they can and cannot. Being there when they cook to safely supervise in subtle ways is an example of maximizing independence within safe parameters. Try to find the right balance for that given moment. Remember it may not be true in the future depending on how they are doing.

Give them a couple of choices rather than leaving things open ended.
For example, rather than saying when would you like to go the grocery store offer the choice of Tuesday at 10am or Friday at 1. Keep the choices in a way that meets their needs and is a favorable scenario for you as the caregiver.

Continue to assess.
Remember the person you are caring for may have good days and bad days or moments in the day where they are very appropriate and lucid. Watch for a pattern of increased decline in function or there may be times of day where they do better or worse. Have a healthcare professional help you with this assessment and be flexible and prepared in terms of structuring supportive services based on what you observe.

Honesty may not always be the best policy for someone with dementia.
There are times where engaging in a battle may not be the best thing to do for you as the caregiver. By definition people who have memory loss forget things and it is not willful. If they forget that a close friend has moved away you may not want to remind them of that. Does it really matter if they think they worked at a bank and really didn’t? Pick and choose the times when you must be honest or transparent with them. Your strategic guideline should be any tactic that reduces stress for you as the caregiver and the person you are caring for is a good direction to take.

Forgiveness is important for all concerned.
You need to remind yourself that the person you are caring for is not necessarily acting out of malice when they can’t acknowledge or differentiate what is real and what is not. Try to be as patient and forgiving as you possibly can. Give yourself a break or timeout if the situation is escalating or frustration or anger are emotions that are growing. You must always remember to forgive yourself as a caregiver. There will be moments when you get angry or frustrated or overwhelmed. You must be able to forgive yourself. If this occurs with increased frequency it is a signal that you need support as a caregiver and some respite time to recharge.


About Iris Waichler
Iris Waichler, MSW, LCSW is the author of Role Reversal How to Take Care of Yourself and Your Aging Parents. Role Reversal is the winner of 5 major book awards. Ms. Waichler has been a medical social worker and patient advocate for 40 years. She has done freelance writing, counseling, and workshops on patient advocacy and healthcare related issues for 17 years. Find out more at her website iriswaichler.wpengine.com

Treating Behavioral Symptoms of Dementia Without Drugs (Next Avenue)

This article from Next Avenue delves into person-centered care, which focuses on treatments which have an impact without the use of medications. For individuals suffering from neurological conditions, small changes in the environment can lead to positive outcomes.

https://www.nextavenue.org/treating-behavioral-symptoms-dementia-without-drugs/


Most people think of dementia as affecting memory and cognition, and it certainly does. But some of the most distressing symptoms of Alzheimer’s or other dementias are behavioral and psychological.

“What takes a lot of families by surprise are the things like agitation, problems sleeping, getting up and wandering; sometimes people even become violent,” said Dr. Keith Fargo, director of scientific programs and outreach for the Alzheimer’s Association.

Some people exhibiting these kinds of behaviors have been treated with anti-psychotic drugs, which has sparked widespread criticism. And the Food and Drug Administration (FDA) has mandated a black box warning on such drugs with older adults with dementia; they are associated with an increased risk of death.

But there’s an alternative.

“A lot of these [behaviors] can be managed with interventions that are really behavioral in nature, that do not require medication,” Fargo said. Those interventions include reminiscence therapy, music and art therapy, aromatherapy and pet therapy.

New Recommendations for Dementia Care

The use of person-centered, non-drug treatments for people with dementia is one of 56 new dementia care practice recommendations issued in late January by the Alzheimer’s Association.

They are “aimed at helping nursing homes, assisted-living facilities and other long-term care and community care providers deliver optimal quality, person-centered care for those living with Alzheimer’s and other dementias,” according to a statement by the Gerontological Society of America (GSA). The recommendations can be found online here and will be published as a supplement to The Gerontologist, the GSA’s peer-reviewed journal.

Responding to Their Environment

Sheryl Zimmerman, a professor and gerontologist at the University of North Carolina at Chapel Hill, was one of three authors of The Gerontologist’s article on non-drug practices for people with dementia.

She said the behavioral and psychological symptoms that often accompany dementia aren’t just a product of the dementia-affected brain. “Some of those behaviors are due to the interplay of the person with the environment,” Zimmerman noted.

For example: things may be happening too quickly, which can be frightening. There may be a high level of noise or too much stimulation.

Negative reactions may be exacerbated by the typical losses of aging: “An individual who has trouble seeing, for example, may be easily startled and distressed by noises that are not clearly identifiable, leading to anxiety or agitation,” the study said.

But employing non-drug therapies can help the person with dementia have a better quality of life and allow caregivers to do their job. “And it avoids the potential likelihood of giving the person (with dementia) a medication that would sedate them,” Zimmerman said.

Evidence for Non-Drug Therapies

Zimmerman and her colleagues examined 197 articles describing scientific evidence on non-drug practices to treat behavioral and psychological symptoms of dementia.

They fell into these categories: sensory practices (aromatherapy, massage, multi-sensory stimulation and bright light therapy), psychosocial practices (validation therapy, reminiscence therapy, music therapy, pet therapy and meaningful activities), and what are known as “structured care protocols” (particular procedures for bathing and mouth care).

Some of what they found:

Aromatherapy

A number of studies have looked at the use of aromatherapy for agitation and aggression in people with dementia.

Overall conclusion: Mixed results. The positive outcomes with some patients may have been because they enjoyed the interpersonal and physical benefits of having cream rubbed into their hands, the study said. More large-scale trials are needed.

Massage

“Through tactile connection, a person living with dementia may feel comforted and cared about, especially in residential care environments where touch tends to be instrumental and task specific,” the study said. Massage may also be successful in combating the social isolation that can contribute to negative behaviors. And it may spur the body’s production of oxytocin, which can infuse a sense of reassurance and calm.

Overall conclusion: A “small evidence base” shows positive results in the immediate or short term. However, some people dislike massage; that may increase agitation for them. As with any therapy, success depends on whether it’s right for the person being treated.

Bright Light Therapy

Normal aging can prompt sleep disturbances. Dementia can further disrupt a person’s circadian rhythm, resulting in agitation and “sundowning,” an increase in confusion, irritability and moodiness as the day wanes.

Bright light therapy consists of using a special light fixture, light box or visor, or exposure to natural bright light.

Overall conclusion: Mixed results. It may have some benefit, but further research is required. Some studies found it may actually make agitation worse.

Pet Therapy

Pets, particularly dogs, have been used for people with dementia for decades. “Physiologically, quiet interaction with an animal can help lower blood pressure and increase production of neurochemicals associated with relaxation and bonding,” which may in turn reduce the behavioral and psychological symptoms of dementia, the study said.

In small studies, pet therapy has succeeded in reducing disruptive behavior and increasing interactions with others.

Overall conclusion: There is a “small and preliminary” evidence base for pet therapy, even when the pet is a robotic cat or dog. Understandably, pet therapy would not work well for people who are allergic or who have had bad experiences with animals in the past.

Bathing

Bath or shower time can be particularly upsetting for a person with dementia. It is “the personal care task associated with the highest frequency of behavioral expressions of distress for persons living with dementia,” the study said. Its intimate nature may cause embarrassment, especially if the person being bathed does not recognize the caregiver and does not understand what is going on.

“Years ago, in nursing homes, people used to be hosed down, if you will,” Zimmerman said. Through a protocol called “Bathing without a Battle,” developed at the University of North Carolina at Chapel Hill, those with dementia exhibit far less agitation and resistance.

Overall conclusion: Studies have shown positive results through relatively simple changes such as sponge baths in bed and creating a “spa-like” environment with music or calming sounds. More high-quality studies are needed for the best evidence, the report said.

Each One an Individual

The bottom line, researchers and advocates said, is that everyone is different. Like any older adult, individuals with dementia have their own preferences about their surroundings, their activities and their medical treatments. That’s the basis of person-centered care.

Most of the non-drug interventions have little potential downside. But it’s important to have guidelines, and those guidelines should be based on evidence, Fargo said.

“That’s why we undertook this effort to do a review of the literature, to find out what kinds of care have the evidence base behind it. And it’s important that we disseminate that to the community,” he said.

Feb 2018 Northern and Central California Parkinson’s Group Guest Speakers

Here’s a list of guest speakers or programs at various Northern and Central California Parkinson’s support group meetings for February 2018. I’ve deleted a few items that probably aren’t of interest to the Brain Support Network community (because they are only applicable to those with PD or are focused on deep brain stimulation).

With my atypical parkinsonism (DLB, PSP, MSA, CBD) hat on, these meetings are especially appealing to me (because of the guest speakers or topics) BUT remember that these are Parkinson’s support group meetings:

  • Santa Rosa, Saturday, 2/3: UCSF psychiatrist Steven Hall, MD is speaking on non-motor aspects of Parkinson’s. I am assuming he will address depression, other mood issues, and anxiety. Perhaps he’ll address hallucinations and delusions.
  • Pacific Grove, Tuesday, 2/13: Movement disorder specialist Salima Brillman, MD is speaking on hallucinations and delusions in Parkinson’s. This is likely of interest to those in our Lewy body dementia group. Note that this talk is sponsored by the maker of a medication for hallucinations.
  • Fremont, Monday, 2/26: Movement disorder specialist Salima Brillman, MD is speaking on hallucinations and delusions in Parkinson’s. This is likely of interest to those in our Lewy body dementia group. Note that this talk is sponsored by the maker of a medication for hallucinations.

As always, I recommend driving no more than 30 minutes to attend any of these meetings.

You can find meeting details (meeting location, group leader contact info, RSVP process, etc.) here.

Robin

**********************

San Lorenzo (San Leandro)
Thursday, 2/1, 10-11:30am
Guest Speaker: Michael Galvan, Community Resources for Independent Living (CRIL)
Topic: Assistive devices to help with PD
RSVP?: No.

San Jose/Willow Glen
Friday, 2/2, 10am-noon
Guest Speaker: Jason Stewart, director of advocacy, Americans for Cures Foundation
Topic: Proposition 71 – California’s landmark stem cell program
RSVP?: No.

Visalia
Friday, 2/2, 10:30am-noon
Program: Watch and discuss “Managing Parkinson’s – Straight Talk and Honest Hope,” Parkinson’s Heartland video
RSVP?: No.

Santa Rosa (Sonoma County)
Saturday, 2/3, 1-3:15pm (guest speaker 1-2pm)
Guest Speaker: Steven Hall, MD, psychiatrist, UC San Francisco
Topic: Parkinson’s – more than motor symptoms
RSVP?: No.

Lodi
Monday, 2/5, 10am-noon
Program: Break into two groups – persons with Parkinson’s and caregivers
RSVP?: No.

San Andreas (Calaveras County)
Tuesday, 2/6, 10am-noon (speaker 10:30am-noon
Guest Speaker: Kendall Gervin, OT, occupational therapist
Topics: Adaptive equipment for independence and self-care; home safety; exercise to maintain balance
RSVP?: No.

Soquel (Santa Cruz County)
Wednesday, 2/7, 1-2:30pm
Guest Speaker: Peter Lin, MD, movement disorder specialist, Valley Parkinson Clinic, Los Gatos
Topic: New developments in PD
RSVP?: No.

Millbrae/Magnolia
Thursday, 2/8, 1:30-3pm
Guest Speaker: Keith Harband, NewEnamel.com
Topic: Dealing with dry mouth
RSVP?: No.

Redding
Friday, 2/9, 1-3:30pm
Guest Speaker: Vibra Healthcare representative
Topics: Occupational therapy program; new changes coming to their Parkinson’s outpatient program
RSVP?: No.

Yuba City (Tri-Counties)
Monday, 2/12, 1-2pm
Guest Speaker: Peter Daley, III, chief, Yuba City Fire
Topics: YCFD services; disaster preparedness for the elderly and disabled
RSVP?: No.

Lakeport
Monday, 2/12, 2-3:30pm
Guest Speaker: Phil Myers, group leader
Topic: Research status
RSVP?: No.

Auburn Caregivers (those with PD can join this meeting)
Tuesday, 2/13, noon
Guest Speakers: Team of women from district attorney’s office
Topics: Aging safely – avoiding fraud, scams, and other stumbling blocks
RSVP?: No.
Note: Those with Parkinson’s are welcome at this particular meeting.

Pacific Grove (Monterey County)
Tuesday, 2/13, 3-4:30pm
Guest Speaker: Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park
Topic: Beyond motor symptoms in PD, including hallucinations and delusions
RSVP?: No.

Palo Alto Young Onset Parkinson’s
Tuesday, 2/13, 6:30-8pm
Guest Speaker #1: Aura Oslapas, StrivePD
Topic #1: StrivePD application
Guest Speaker #2: Ruth Gardner
Topic #2: Dental hygiene and PD
RSVP?: Yes, if this is your first time attending. Please RSVSP to Martha Gardner, group leader, at least one day in advance.
Note: Group returning to the old location at Lucile Packard Children’s Hospital

Menlo Park/Little House (New meeting location! No longer at Avenidas
in Palo Alto.)
Wednesday, 2/14, 2-3:30pm
Main Program: Please bring one tip and one gadget/equipment (if carry-able) that you recommend to people with Parkinson’s or caregivers of those with Parkinson’s
Guest Speaker: Amaris Martinez, Stanford Neurology, giving a brief overview of Stanford PD plasma study
RSVP?: No.

Merced
Thursday, 2/15, 10am-noon
Guest Speaker: Rekha Rishi-Khanna, SLP, speech therapist, Care One Home Health, Modesto
Topics: Communication and swallowing issues with PD
RSVP?: No.

Walnut Creek (Mt. Diablo)
Saturday, 2/17, 9am-noon (speakers 10:45am-11:45am)
Guest Speakers: Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park, and Stephanie Fiola, BSN, nurse educator, AbbVie
Topic: Duopa – treatment for advanced Parkinson’s
RSVP?: No.

Lincoln
Tuesday, 2/20, 10-11am
Guest Speaker: Ginger McMurchie, Elder Care Management of Northern California, Granite Bay
RSVP?: No.

Modesto
Wednesday, 2/21, 1:30-3:30pm
Guest Speaker: Representative from Rock Steady Boxing, Modesto
RSVP?: No.

Mill Valley (Marin County)
Friday, 2/23, 1-3pm (speaker 1-2pm)
Guest Speaker: Aura Oslapas, StrivePD
Topic: Voice and mobile app to make life easier with PD
RSVP?: No.

Fremont
Monday, 2/26, 7-9:30pm
Guest Speaker: Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park
Topic: PD – more than motor symptoms
RSVP?: No.