“Changing The Way We Look At Dementia” (KHN)

Judith Graham writes a “Navigating Aging” column for Kaiser Health News (khn.org). Many of her columns are worth reading, like a recent one on changing the way we look at dementia. The article is about an effort by Dementia Friends to change the way people talk about dementia as that “can make a big difference in people’s lives.” Another person says: “It’s about increasing awareness and empathy so that if you encounter someone in the community who needs some help, you have some basic skills.”

Here’s one story from the article:

“Bob Savage, an 86-year-old diagnosed two years ago with Alzheimer’s disease, became a Dementia Friend last year and now speaks to groups in Connecticut that are promoting the program. Some of what he tells them: ‘As soon as people learn you have Alzheimer’s, you’re stigmatized. People treat you different, like you don’t understand, and that’s very upsetting.’ Even if memory is lost, intuition and emotional understanding remain intact, Savage explained. What he and other people with dementia want most is ’emotional connection — that feeling of love that we had, that we may have lost’ when a diagnosis was delivered and a sense of being a burden to other people descended.”

You can get more info about the US effort called Dementia Friends USA from their website, dementiafriendsusa.org.

The full article is copied below.

Robin

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khn.org/news/changing-the-way-we-look-at-dementia/

Navigating Aging
Changing The Way We Look At Dementia
By Judith Graham
Kaiser Health News
February 8, 2018

In November, six people with Alzheimer’s disease and related types of cognitive impairment stood before an audience of 100 in North Haven, Conn.

One by one, they talked about what it was like to live with dementia in deeply personal terms.

Before the presentation, audience members were asked to write down five words they associated with dementia. Afterward, they were asked to do the same, this time reflecting on what they’d learned.

“Without exception, the words people used had changed — from ‘hopeless’ to ‘hope,’ from ‘depressed’ to ‘courageous,’ from ‘empty’ to ‘fulfilled,’” said Erica DeFrancesco, a clinical assistant professor of occupational therapy at Quinnipiac University who helped organize the event.

The session, followed by an hour-long discussion about dementia, is part of a new grass-roots movement in the U.S. aimed at educating people about Alzheimer’s disease and other forms of dementia, dispelling the painful stigma associated with these conditions and enhancing public understanding.

A centerpiece of that effort, known as “Dementia Friends,” began just over a year ago under the auspices of Dementia Friendly America, an effort spearheaded by 35 organizations across the country.

Currently, more than 13,200 people are registered as Dementia Friends in the U.S., and organizations in 14 states (Arizona, California, Connecticut, Hawaii, Illinois, Indiana, Maryland, Massachusetts, Michigan, Minnesota, Ohio, North Carolina, Virginia, Wyoming) are hosting events to sign up more.

Globally, almost 14 million people in 33 countries are involved in the movement, which originated in Japan.

To become a Dementia Friend, most people attend an hour-long presentation focused on several themes:

* Disease vs. typical aging. Alzheimer’s disease and other types of dementia are illnesses of the brain, not a natural consequence of aging.

* Scope of symptoms. Dementia triggers a wide array of symptoms, not just memory loss.

* Quality of life. People with dementia can live well, often for years.

* Maintaining identity and respect. People with dementia retain a sense of self and aren’t defined exclusively by this condition. (Testimonials by people with dementia are sometimes, but not always, included.)

“If we can change the way people look at dementia and talk about it, we can make a big difference in people’s lives,” said Philippa Tree, who spearheads a well-established Dementia Friends program in England and Wales, with about 2.3 million members, that has licensed its model to the U.S.

“It’s about increasing awareness and empathy so that if you encounter someone in the community who needs some help, you have some basic skills,” said Meredith Hanley, project lead for Dementia Friends USA.

William Anderson, chief of police for St. Cloud, Minn., went to a session of this kind late last year, with about 40 members of his department. One exercise — writing down all the steps involved in making a peanut butter and jelly sandwich — made an especially strong impression.

“I’d never thought about everything that goes into something that simple: taking the peanut butter and jelly out of the cabinet, unscrewing the tops, getting a knife, spreading the sides of the bread, putting the pieces on top of each other, cutting it down the middle,” Anderson said, adding that this was only a partial list.

“The point they were making was that folks with dementia might remember some of these steps but not others. At some point, they’ll get distracted or forget what they were doing and go on to something else. To me, that was eye-opening; it explained a lot.”

Now, Anderson thinks about “how we can make life more manageable for these folks, in simple ways.” An example: The St. Cloud Police Department’s building has a large vestibule, with two big glass doors. “If you have dementia, you’re going to walk into that vestibule and probably turn around in circles because the doors don’t have an identifier saying ‘police,’” he said, adding that introducing new signage is under consideration.

Committing to a concrete action — visiting or phoning a family member with Alzheimer’s regularly, watching out for a neighbor, volunteering with a community organization or trying to make public venues easier to navigate, for instance — is required to become a Dementia Friend, though sponsors don’t check if people follow through.

“This is a social action movement,” said Emily Farah-Miller, executive lead for ACT on Alzheimer’s, a statewide effort in Minnesota to create dementia-friendly communities and disseminate best practices regarding dementia in health care settings.

More than 10,000 U.S. Dementia Friends come from Minnesota, which began recruiting residents for the program two years ago, before it became a national initiative.

This year, Minnesota ACT on Alzheimer’s leaders are working with African-American, Hispanic, American Indian, West African and Hmong communities in their state to make culturally sensitive adaptations to their programs. And they’re piloting a modified version of Dementia Friends in several elementary schools “to create a dementia-friendly generation of youth,” Farah-Miller said.

Individuals can also earn a “Dementia Friends” designation by watching an introductory video on Dementia Friends’ USA website, as well as a second video about dealing with people with dementia in various settings such as restaurants, stores, banks, libraries, pharmacies, faith communities and public transportation.

If you encounter someone who seems confused and disoriented on a bus, train, taxi or subway, try to understand what that person might need, one of these videos advises. Speak slowly, using short, simple sentences and give the person adequate time to respond. Remain calm and reassuring and avoid arguing or embarrassing the person who may have forgotten where they’re going.

Bob Savage, an 86-year-old diagnosed two years ago with Alzheimer’s disease, became a Dementia Friend last year and now speaks to groups in Connecticut that are promoting the program.

Some of what he tells them: “As soon as people learn you have Alzheimer’s, you’re stigmatized. People treat you different, like you don’t understand, and that’s very upsetting.”

Even if memory is lost, intuition and emotional understanding remain intact, Savage explained.

What he and other people with dementia want most is “emotional connection — that feeling of love that we had, that we may have lost” when a diagnosis was delivered and a sense of being a burden to other people descended.

In 2016, Savage moved to a campus in Southington, Conn., where 133 people with dementia reside in assisted living or a skilled nursing facility. Stephani Shivers, chief operating officer of LiveWell (formerly the Alzheimer’s Resource Center), which owns the campus, is leading Connecticut’s Dementia Friends initiative.

“What I’ve seen is that barriers seem to dissolve for people who attend” information sessions, she said. “Whether it’s ‘I’m not sure what to say to someone with dementia’ or ‘I’m nervous about being with someone with dementia,’ the ‘I don’t know what to do’ falls away.

“It becomes me relating to you, a person with dementia, as another human being — a human being living with a cognitive disability, just like people living with physical disabilities.”

KHN’s coverage of these topics is supported by John A. Hartford Foundation and Gordon and Betty Moore Foundation

“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. 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

What is Anosognosia and How Does it Impact You as a Caregiver?
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 http://iriswaichler.wpengine.com

Advance Care Directive for Dementia (New York Times)

This recent New York Times (nytimes.com) article is about the idea that the typical advance care directive doesn’t say much about dementia.  A physician recently developed a dementia-specific advance directive, which you can find here:

* Advance Directive for Dementia, dementia-directive.org

Two other resources are referred to in the article —

* The Conversation Project, theconversationproject.org
* Prepare for Your Care, prepareforyourcare.org

(I have previously posted about those resources.)

Here’s a link to the full article:

www.nytimes.com/2018/01/19/health/dementia-advance-directive.html

One Day Your Mind May Fade. At Least You’ll Have a Plan.
by Paula Span
The New Old Age/The New York Times
Jan. 19, 2018
Robin

“For Elder Health, Trips To The ER Are Often A Tipping Point” (Kaiser Health News)

This is an interesting article from Judith Graham, who writes a column for Kaiser Health News (khn.org) called “Navigating Aging.” Research shows that “An older person’s trip to the ER often signals a serious health challenge and should serve as a wake-up call for caregivers and relatives.” This is true for seniors who are not admitted to the hospital but visit the ER.

Ms. Graham asks: “Why would seeking help in an ER often become a sentinel event, with potential adverse consequences for older adults?”

She says: “Experts offer various suggestions: Seniors…may need more help at home than what’s available, and their health may spiral downward. Other possibilities: Seniors who fall and injure themselves — a leading cause of ER visits — may become afraid of falling again and limit their activities, leading to deterioration. Or, underlying vulnerabilities that led to an ER visit — for instance, depression, dementia or delirium (a state of acute, sudden onset confusion and disorientation) — may go undetected and unaddressed by emergency room staff, leaving older adults susceptible to the ongoing impact of these conditions.”

This advice is offered for the ER visit and afterwards:

* “My biggest piece of advice is get there and stay by their side throughout the experience, because things happen very quickly in emergency rooms, and these are difficult environments to navigate under the best of circumstances,” said Dr. Kathleen Unroe, associate professor of medicine at Indiana University School of Medicine.

* Ask for a room instead of letting your family member stay in a hallway.

* Provide a complete list of medications.

* Focus on comfort by bringing “eyeglasses and any hearing-assist devices that can help keep your loved one oriented. If you think Mom is in pain, encourage her pain to be treated.”

* Educate yourself. “Know what happened in the ER. What tests were done? What diagnoses did the staff arrive at? What treatments were given? What kind of follow-up is being recommended?”

* Communicate effectively. “Utilize teach-back. When the nurse or doctor says, ‘OK, you’re supposed to do this when you get back home,’ say, ‘Let me see if I understand. I hear you say take this medication on this schedule. Did I get that right?’”

* Follow through. “Ask ‘How is Mom’s regular doctor going to know what happened here? Who’s responsible for telling him — do you make that call or do I? And how soon should we try to get in for a follow-up appointment?’”

* Observe your loved one over the next few days after an ER visit.

The full article is below.

Robin


khn.org/news/for-elder-health-trips-to-the-er-are-often-a-tipping-point/

NAVIGATING AGING
For Elder Health, Trips To The ER Are Often A Tipping Point
By Judith Graham
January 11, 2018
Kaiser Health News

Twice a day, the 86-year-old man went for long walks and visited with neighbors along the way. Then, one afternoon he fell while mowing his lawn. In the emergency room, doctors diagnosed a break in his upper arm and put him in a sling.

Back at home, this former World War II Navy pilot found it hard to manage on his own but stubbornly declined help. Soon overwhelmed, he didn’t go out often, his congestive heart failure worsened, and he ended up in a nursing home a year later, where he eventually passed away.

“Just because someone in their 70s or 80s isn’t admitted to a hospital doesn’t mean that everything is fine,” said Dr. Timothy Platt-Mills, co-director of geriatric emergency medicine at the University of North Carolina School of Medicine, who recounted the story of his former neighbor in Chapel Hill.

Quite the contrary: An older person’s trip to the ER often signals a serious health challenge and should serve as a wake-up call for caregivers and relatives.

Research published last year in the Annals of Emergency Medicine underscores the risks. Six months after visiting the ER, seniors were 14 percent more likely to have acquired a disability — an inability to independently bathe, dress, climb down a flight of stairs, shop, manage finances or carry a package, for instance — than older adults of the same age, with a similar set of illnesses, who didn’t end up in the ER.

These older adults weren’t admitted to the hospital from the ER; they returned home after their visits, as do about two-thirds of seniors who go to ERs, nationally.

The takeaway: Illnesses or injuries that lead to ER visits can initiate “a fairly vulnerable period of time for older persons” and “we should consider new initiatives to address patients’ care needs and challenges after such visits,” said one of the study’s co-authors, Dr. Thomas Gill, a professor of medicine (geriatrics), epidemiology and investigative medicine at Yale University.

Research by Dr. Cynthia Brown, a professor and division director of gerontology, geriatrics and palliative care at the University of Alabama at Birmingham, confirms this vulnerability. In a 2016 report, she found sharp declines in older adults’ “life-space mobility” (the extent to which they get up and about and out of the house) after an emergency room visit, which lasted for at least a year without full recovery.

“We know that when people have a decline of this sort, it’s associated with a lot of bad outcomes — a poorer quality of life, nursing home placement and mortality,” Brown said.

Other research suggests that seniors who are struggling with self-care (bathing, dressing, toileting, transferring from the bed to a chair) or with activities such as cooking, cleaning and managing medications are especially vulnerable to the aftereffects of an ER visit.

Why would seeking help in an ER often become a sentinel event, with potential adverse consequences for older adults?

Experts offer various suggestions: Seniors who were previously coping adequately may be tipped into an “I can’t handle this any longer” state by an injury or the exacerbation of a chronic illness, such as diabetes or heart failure. They now may need more help at home than what’s available, and their health may spiral downward.

Other possibilities: Seniors who fall and injure themselves — a leading cause of ER visits — may become afraid of falling again and limit their activities, leading to deterioration. Or, underlying vulnerabilities that led to an ER visit — for instance, depression, dementia or delirium (a state of acute, sudden onset confusion and disorientation) — may go undetected and unaddressed by emergency room staff, leaving older adults susceptible to the ongoing impact of these conditions.

In response to concerns about the care older adults are receiving, the field of emergency medicine has endorsed guidelines designed to make ERs more senior-friendly. With the rapid expansion of the aging population, which accounts for more than 20 million ER visits each year, “our traditional model of emergency medicine has to shift its paradigm,” said Dr. Christopher Carpenter, associate professor of emergency medicine at Washington University School of Medicine in St. Louis.

The guidelines call for educating medical staff in the principles and practice of geriatric care; assessing seniors to determine their degree of risk; screening older adults deemed at risk for cognitive concerns, falls and functional limitations; performing a comprehensive medication review; making referrals to community resources such as Meals on Wheels; and supplying an easily understood discharge plan.

Starting in February, the American College of Emergency Physicians (ACEP) is launching an accreditation program for emergency rooms, certifying at least a minimal level of geriatric competence — another effort to improve care and outcomes for older adults. Three levels of accreditation — basic, intermediate and advanced — will be offered.

For each of these levels, ERs will be required to provide walkers, canes, food and drink, and reading glasses to older patients. For intermediate and advanced accreditation, physicians will have to oversee improvement initiatives, such as limiting the use of urinary catheters in older patients. Also, changes to the ER environment such as nonslip floors and enhanced lighting will be required, along with amenities such as hearing devices, thicker mattresses and warm blankets.

Family members can also help older adults during and after a visit to the ER.

“My biggest piece of advice is get there and stay by their side throughout the experience, because things happen very quickly in emergency rooms, and these are difficult environments to navigate under the best of circumstances,” said Dr. Kathleen Unroe, associate professor of medicine at Indiana University School of Medicine.

Dr. Kevin Biese, chair of the board of governors for ACEP’s geriatric ER accreditation initiative, offers these recommendations:

* Escape the crowd. “Ask for a room, instead of letting your loved one stay out in the hallway — a horrible place for seniors at risk of delirium. Tell staff, who may have put Mom in the hallway because she’s a fall risk and they want to keep an eye on her, ‘I’ll watch Mom and make sure she doesn’t get out of bed.’”

* Supply a full list of medications. “And ask the doctor or nurse to make sure that your list is the same as what’s in [the hospital’s] computer. If not, have them update the computer list. Don’t leave without knowing which medications have been stopped or changed, if any, and why.”

* Focus on comfort. “Bring eyeglasses and any hearing-assist devices that can help keep your loved one oriented. If you think Mom is in pain, encourage her pain to be treated.”

* Educate yourself. “Know what happened in the ER. What tests were done? What diagnoses did the staff arrive at? What treatments were given? What kind of follow-up is being recommended?”

* Communicate effectively. “Utilize teach-back. When the nurse or doctor says, ‘OK, you’re supposed to do this when you get back home,’ say, ‘Let me see if I understand. I hear you say take this medication on this schedule. Did I get that right?’”

* Follow through. “Ask ‘How is Mom’s regular doctor going to know what happened here? Who’s responsible for telling him — do you make that call or do I? And how soon should we try to get in for a follow-up appointment?’”

* Keep tabs on your loved one. Finally, “you need to see the few days after a visit to the ER as a time of critical importance, when increased vigilance is required. Arrange for some extra help if you can’t be around, even if only for a few days. Check in frequently on Mom and make sure her needs are being met, her pain is being adequately controlled and she’s not getting delirious. Does the plan of care that she left the ER with seem to be working?”

KHN’s coverage of these topics is supported by John A. Hartford Foundation and Gordon and Betty Moore Foundation

Caregivers are often forgotten (article by widow of Gene Wilder)

This is an article by Karen Wilder, the widow of Gene Wilder who died in 2017 with Alzheimer’s Disease (AD). She writes for ABC News (abcnews.com). Karen Wilder describes her late husband’s symptoms and her role as a caregiver. Though this article is about caregiving for someone with AD, the messages apply to all caregivers. Basically, her messages are that caregivers are overlooked and caregivers can die before their loved ones.

She says: “But let’s not forget that other killer — the silent one that takes its victim even before the disintegration of brain cells does its own dirty work. I am speaking of the crisis that can kill the once-healthy loved spouses, siblings, friends and adult children of Alzheimer’s patients, who devote almost every waking hour of their lives (and also the nights) to caring for a person they love.”

She notes that: “40 percent of Alzheimer’s caregivers die before the patient according to a study done by Stanford Medicine — not from disease, but from the sheer physical, spiritual and emotional toll of caring for a loved one with Alzheimer’s.”

And she says: “It is a strange, sad irony that so often, in the territory of a disease that robs an individual of memory, caregivers are often the forgotten. Without them, those with Alzheimer’s could not get through the day, or die — as my husband did — with dignity, surrounded by love.”

Here’s a link to the article on the ABC News website:

abcnews.go.com/Entertainment/gene-wilders-widow-care-alzheimers/story?id=52045475

Gene Wilder’s widow on what it’s like to care for someone with Alzheimer’s
By Karen Wilder
Jan 2, 2018, 12:36 PM ET
ABC News

Robin

2017 Accomplishments and Year-End Challenge Grant (for contributions by Dec. 31st!)

As 2017 ticks down, we hope you enjoy some quality-time with family and friends. We wanted to share our results for 2017. Plus, this is a great time to make a charitable contribution as other generous donors are doubling your contribution.

UPDATE

Brain Support Network (BSN) continues to pursue its three missions:
(1) create and disseminate information on LBD, PSP, MSA, and CBD to members (You are one of 450 Northern Californians on our network’s email list.)
(2) coordinate the local caregiver support group in San Mateo
(3) help any family with brain donation.

We (BSN volunteers and part-time employees) have kept busy in 2017:

UPDATE

Brain Support Network (BSN) continues to pursue its three missions:

(1) create and disseminate information on LBD, PSP, MSA, and CBD to members

(2) help any family with brain donation

(3) coordinate the local caregiver support group in Northern California

We (BSN volunteers and part-time employees) have kept busy in 2017:

* We sent out over 250 email updates, most of which focused on one of four specific disorders: LBD (Lewy body dementia), PSP (progressive supranuclear palsy), MSA (multiple system atrophy), and CBD (corticobasal degeneration). Many emails relate to caregiving and dementia caregiving.

* We published over 600 Facebook posts on similar subjects (because some people prefer Facebook).

* We served as a clearinghouse of information and support for network members.

* We have kept our web site relevant and up to date (e.g. our “Top Resources” lists for the four primary disorders and our blog).

* We organized 94 brain donations (a new record for BSN), most of which were delivered to the Mayo Clinic in Jacksonville. (Of course the year isn’t quite finished.)

* We hosted our largest-ever “Research Update and Practical Conference on PSP/CBD” in cooperation with the UCSF Memory and Aging Center on October 28, 2017, in San Mateo. Conference video and handouts are available.

CHALLENGE GRANT

This is the time of year when we ask you for assistance.

Five long-time support group members and two long-time BSN benefactors have offered a “challenge grant” to network members. Your charitable contributions through December 31st will be matched up to $8,000. Please help us take advantage of this opportunity and help make possible our efforts for the coming year.

If you mail a check, please write “match” on the memo line along with the name of the family member or friend that you are honoring or remembering. Or, enclose a note with that information. Make checks payable to “Brain Support Network,” and mail to BSN, PO Box 7264, Menlo Park, CA 94026. To count towards the challenge donation, checks should be dated and postmarked by December 31, 2017, Your check does *not* need to be received by this date.

If you make an online contribution (via credit card), please write the name of your family member/friend after selecting “in honor of” or “in memory of.” Please append “/Match” to the name of the person. To count towards the challenge donation, online contributions should be completed by Sunday, December 31, at 11:59pm California time.

Brain Support Network is recognized by the IRS as a 501(c)(3) tax-exempt charity and your donations are deductible to the extent allowed by law. Please know that any amount—$25, $50, $100, $250, $500, or more—is appreciated! Thank you for supporting our three missions!

Happy 2018 to you and your families!

Take care,
Robin (volunteer)
Brain Support Network CEO

“Hands-on Caregiving” – notes from two lectures

Hope everyone is enjoying warm holidays with family and friends.

In November 2017, the National Caregiving Conference was held in Chicago. Many of the sessions were webcast. Brain Support Network volunteer Denise Dagan listened to many of the sessions, including a session titled “hands-on caregiving.”

There were two speakers – Penny Patnaude, who calls herself a “caregiver strategist,” and pastor Bruce Hanson, former caregiver to his wife with diabetes.

The first part of Penny’s talk is aimed at those dealing with behavioral issues in the context of dementia. But the second part of her talk is about general caregiving.

I liked Penny’s suggestions on creating a support network for the caregiver. About friends, family, fellow church members, club members, and neighborhood children, ask yourself: “Who loves reading, playing cards, watching TV, going to museums, puzzles, music, knitting, painting, etc?” Can two people (different days/times) come over 2 hours each week to spend time with your loved one while you get some respite?

Penny introduced the topic of a “caregiver contract.” This is a formal agreement among family members to compensate a family member for providing care. You can read more about this type of contract here:
www.caregiver.org/personal-care-agreements

Denise’s notes about the two lectures are below.

Robin
————————–

Notes by Denise Dagan, Brain Support Network Volunteer

Hands-on Caregiving with Pastor Bruce Hanson and Penny Patnaude
2017 National Caregiving Conference
November 10, 2017

Penny Patnaude – Caregiver Strategist, LLC

Behavioral Difficulties:
– Wandering can be caused by a feeling of loss, make sure your loved ones receive plenty of exercise, limit caffeine, tea, soda and excessive napping.
– Ask physician for a sedative
– Activities throughout the day
– Paint walls and doors in same color makes finding the exit difficult
– Add pleasant circumstances into the environment (music, pet, fun)

Sundowning Syndrome:
– Use bright lighting in the late afternoon and evenings
– Avoid napping, keep consistent schedules
– Ask doctor for medication (you may have to try several & may not work at all)
– Meet them where they are, don’t argue or discount their hallucination/delusion. Use therapeutic fibbing, which is altering the truth to minimize agitation. Tell them whatever it takes to calm them.
– Distract them
– Add pleasant circumstances
– Avoid agitating topics

Eating Challenges:
– Bite size portions (cut before you serve)
– Finger food
– Ensure, carnation drinks, protein shakes
– Smoothies with pulverized veg & fruits
– Hydrate often
– Large grip utensils & dinner wear (suction cups on the bottom of bowls & plates)
– Ice cream, sweets, soft items easily digestible (non diabetics)
– Salty foods (non high blood pressure)

Bathing:
– Older generation didn’t bathe often when they were young.
– Make the room, clothes & water warm
– Prepare ahead of taking them into the bathroom (clean towels)
– Pleasant aroma
– Talk soothingly
– Use a sitting stool with a slide seat (soap it so they slide into tub easily)
– Let them keep their undergarments on.

Safety:
– Remove spoiled food
– Remove throw rugs
– Remote cords and cables to prevent tripping
– Keep pathways clear
– Get rid of clutter
– Install gas shut offs
– Use ID tools. Project Lifesavers (GPS). Sheriff’s Dept. may be able to help with this.

Negative feelings (in the caregiver):
– Overwhelmed
– Anger
– Agony
– Stress

Support Tribe:
– Identify skills of loved ones, friends, members of church, clubs and kids.
– Ask yourself, “Who loves reading, playing cards, watching TV, go to museums, puzzles, music, knitting, painting, etc.” Then, enlist those people to do those things with your care recipient.
– Ask for 2 hrs/week from at least 2 people to give yourself some respite.

Caregiver Contract Guide:
– Include the names of all people involved
– What services will be provided by each person
– When will services take place
– What are the service fees
– How often will the charges occur

Caregiver Contract Benefits:
– Can be used to spend down care receiver’s money so they qualify for medicaid.
– Provide financial relief to the caregiver
– Keeps everyone responsible.

To learn more about Caregiver Contracts:
www.caregiver.org/personal-care-agreements

Pastor Bruce Hanson Former caregiver of his wife who has passed away. She was an insulin dependent diabetic when they married. He’s a technical guy so he took care of her diabetes equipment. Over time her diabetes and overall health worsened dramatically. He promised never to put her in a nursing home. He turned their house into a hospital with lifts and other equipment.

Learn what your insurance company will and won’t cover and be prepared to fight to get what they should be covering.

Learn about Medicare and Medicaid. They won’t tell you what they will cover unless you know to ask for it and how.

Learn where to find equipment. This is even more difficult when you live in a rural area, like they did.

Which ambulance service can you use? Which hospital is that insurance company going to take you to? Once you are at one hospital it is nearly impossible to move to another one.

Need some way to keep careful track of all the different doctors, medications, medical history, pharmaceutical history, etc.

Keep together all the information you will need for emergency room visits, and keep it available to travel with the care recipient.

Personally, he stayed out of her personal/private care, but left that to a female caregiver. He helped with lifting and managing her overall care.

Learn how to do all in-home care necessary to prevent having to transfer her to medical facilities whenever possible because of their rural location.

The goal is to provide care in the home so the person needing care is as comfortable as possible. Be persistent and resourceful. Get involved with your state/federal legislative policy. Don’t be faint of heart. Don’t leave a hospitalized care recipient alone at any time. Be their advocate.

“If you can’t get in the front door, try the side door, the back door, the garage door, and if you can’t get into any of them, make a door.”

Sometimes, you make mistakes. You’re only human. The flip side is, if you aren’t there doing everything for them, who would be?

“The Long Goodbye: Coping With Sadness And Grief Before A Loved One Dies”

This is a good article from Kaiser Health News (khn.org) about anticipatory grief:

khn.org/news/the-long-goodbye-coping-with-sadness-and-grief-before-a-loved-one-dies/

Navigating Aging
The Long Goodbye: Coping With Sadness And Grief Before A Loved One Dies
By Judith Graham
Kaiser Health News
December 21, 2017

Suggestions for coping including:  acknowledge your feelings, talk opening, communicate sensitively, lean in, and seek support.

Robin


Navigating Aging
The Long Goodbye: Coping With Sadness And Grief Before A Loved One Dies
By Judith Graham
Kaiser Health News
December 21, 2017

For years before her death at age 96, Nancy Lundebjerg’s mother underwent a long, slow decline.

Arthritis made it hard for Margaret Lundebjerg to get around. After two hip surgeries, she needed a walker when she was out and about.

Incontinence was a source of discomfort, as was the need to rely on aides to help her perform daily chores.

Little by little, Margaret became frail and isolated. “There was a sadness to seeing my mother’s circle of life become diminished,” said Nancy Lundebjerg, 58, CEO of the American Geriatrics Society, who wrote about her experiences in the organization’s journal.

The anguish accompanying aging isn’t openly discussed very often, nor is its companion: grief. Instead, these emotions are typically acknowledged only after a loved one’s death, when formal rituals recognizing a person’s passing —the wake, the funeral, the shiva — begin.

But frailty and serious illness can involve significant losses over an extended period of time, giving rise to sadness and grief for years.

The loss of independence may be marked by the need to use a walker or a wheelchair. The loss of a cherished role may dishearten an older woman who is no longer able to cook dinner for her extended family, gathered at the holidays. The loss of shared memories may be painful for adult children when their older father is diagnosed with dementia. And these are but a few examples.

Looming over everything is the loss of the future that an older adult and his or her family imagined they might have, often accompanied by anxiety and dread.

This pileup of complex emotions is known as “anticipatory loss.” “The deterioration of function, disability and suffering have their own grieving processes, but helping families deal with that isn’t built into the health care system,” said Dr. John Rolland, professor of psychiatry at Northwestern University’s Feinberg School of Medicine and author of “Families, Illness and Disability: An Integrative Treatment Model.”

Rolland and several other experts offered advice on how to deal with difficult emotions that can arise with frailty or serious illness:

Acknowledge Your Feelings

 Grief starts the moment someone with a serious illness receives the diagnosis,” said Tammy Brannen-Smith, director of grief and loss services at Pathways, a hospice in Fort Collins, Colo. But it doesn’t stop there. Each time a capacity is lost — for instance, an older adult’s ability to negotiate stairs, to drive or to manage household finances — sadness and grief can arise afresh. Brannen-Smith encourages people to acknowledge their feelings and try to “normalize them, because people don’t understand that everyone goes through this.”

Talk Openly

When families avoid talking about an aging parent’s frailty or serious illness, the person with the condition can become isolated and family relationships can become strained.

“My view is, you’re better off trying to get through whatever you’re facing together,” Rolland said.

When Rolland works with couples who are dealing with multiple sclerosis, for instance, he asks them to make a list of things they’d like to discuss but don’t. “Usually, there’s about a 75 percent overlap, and it’s a tremendous relief to most people to find out they don’t have to keep things locked up inside,” he said.

“People who are facing serious illness think about what might lie ahead all the time,” Rolland said. “For a family member not to bring this up, for everyone to be off in their own grieving pockets, alone, isn’t helpful.”

Communicate Sensitively

Abigail Levinson Marks, a clinical psychologist in San Francisco, regularly works with adults who have brain tumors, which can alter their thinking and wipe out their memories, as dementia does for millions of older adults.

“People with these conditions aren’t the same as they were before, but it would be heartbreaking for them to know that you didn’t see them as the same person,” she said. “So, the truth becomes something that cannot be named and that everybody avoids, for fear of shaming the person.”

 In her practice, Marks asks “people to share what each person is going through and not worry about protecting each other from what they’re feeling,” she explained. “Because protecting each other leads to feeling more alone and magnifies the feelings of loss.”

For a caregiver of someone with dementia, that might mean saying,“Sometimes you might see a look crossing my face and think that I’m disappointed. It’s not that I’m upset with you. It’s that I’m sad that there are things that happened in our past that we don’t remember together.”

For someone who has suffered a stroke, it might mean encouraging them to open up about how hard it is to lose a measure of independence and be seen as someone who’s disabled.

Lean In

How people respond to sadness and grief varies, depending on their personality, past experiences, the relationship they have with the person who’s frail or ill, and the nature of that person’s condition.

“Sadness can make you cherish a person even more and appreciate small moments of connection,” said Barry Jacobs, a Pennsylvania psychologist and co-author of “AARP Meditations for Caregivers.”

Some people, however, can’t tolerate feeling this distress and end up distancing themselves from someone whose health is declining. Others might show up in person but focus on tasks instead of allowing themselves to connect emotionally.

If possible, lean in rather than letting yourself become distant. “Cherish the time that you have together,” Jacobs said. “Rather than pulling back, move toward the person and be as engaged with them as possible, particularly on an emotional level.” In the end, connection eases the pain of grief, and you’ll be glad you had this time with the person.

Seek Support

“Don’t confront grief alone or in isolation,” said Alan Wolfelt, founder and director of the Center for Loss & Life Transition in Fort Collins, Colo. “Have people around you who are supportive and who will be present for you” — family members, friends, people from a support group, whoever is willing to be a companion through your journey through serious illness.

Ultimately, this journey will help shape how you ultimately experience a loved one’s death.

Wolfelt describes mourning his mother twice. “The day she was diagnosed with Alzheimer’s and all the days I watched her dwindle. And then, the day she died, I had to begin mourning again, at a whole other level.”

But Lundebjerg of the American Geriatrics Society found a measure of peace when her mother finally passed away, after two seizures and the family’s decision not to pursue further treatment. “It was OK that she died because she was ready — she had made that very clear. And I had come to peace, over a very long time, with the fact that this was going to be coming.”

KHN’s coverage of these topics is supported by John A. Hartford Foundation and Gordon and Betty Moore Foundation.

Questions to ask a potential agency caregiver

The Parkinson Foundation (parkinson.org) has a useful worksheet on questions to ask an agency caregiver during the hiring process.  Though the worksheet is published by the Parkinson Foundation, there is nothing Parkinson’s-specific about the worksheet or questions.

As the worksheet says:

Hiring someone to take care of your loved one is a decision that must be made with careful consideration. There are many questions you can ask to make sure the agency can meet your needs, as well as questions to make sure the agency and its employees are competent and have the proper training,
licensing and insurance.

Here’s a link to the worksheet:

www.parkinson.org/sites/default/files/CaringandCoping_WORKSHEETS_Questions%20to%20Ask%20an%20Agency%20Caregiver_form.pdf

Robin

 

Coping with problem behaviors (DICE approach and a useful caregiver guide book)

The NIH (National Institutes of Health) hosted a two-day summit in October 2017 on research that is needed to improve quality of care of persons with dementia and their caregivers.  The summit was streamed live.  The summit was of most interest to those involved in research.  Only a few useful ideas were shared, including the DICE approach, which we’ve heard about previously.  It is an approach to responding to difficult behaviors.

DICE =

Describe – the who, what, when and where of situations where problem behaviors occur (the physical and social contexts)

Investigate – current dementia symptoms, medications, sleep habits, etc. that may be contributing to difficult behavior.

Create – a plan to prevent and respond to difficult behaviors by changing environment and educating the caregiver.

Evaluate – how well the plan is being followed and how it is working.  Make necessary adjustments that work for the family.

Recently, Laurie White, a social worker in the North Bay, sent me a copy of her excellent guide for family caregivers on “Coping with Behavior Change in Dementia” (dementiacarebooks.com).  (The book is to be shared within our local support group.)  Basically, this is a handbook to implementing the DICE approach.  Laurie and co-author Beth Spencer begin by saying that the family caregiver must become a “detective” to understand the cause of these behaviors.  They address coping with the 4As – anxiety, agitation, anger, and aggression – among other problems.  One guide book gives lots more helpful ideas to dementia caregiving than an entire two-day NIH conference!

Robin