Category Archives: Caregiving – Dementia

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

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“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

Advance Care Directive for Dementia (New York Times)

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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)

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“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)

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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!)

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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