Those with neurological disorder have suggestions for family and friends

Though this blog post is written by people with Lewy Body Dementia, very little of this is specific to LBD, which is why I’m sharing it on our blog. Whenever you read “LBD” or “Lewy body dementia,” just replace it with the disorder you are dealing.

Last year, an Ann Arbor support group for those with an LBD diagnosis created a list of things to keep in mind when you have a family member or friend with LBD.  These are suggestions of what families and friends “can do and don’t do.”  The list includes items such as:

* give me some slack
* don’t hover
* let me make a mistake

The list is posted to the University of Michigan Health Blogs.  I’ve copied most of the blog post below.

Robin

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uofmhealthblogs.org/neurohealth/when-someone-you-have-has-lewy-body-dementia/28231/

When you love someone with Lewy Body Dementia
Suggestions for family and friends from people with LBD
Posted by Members of the Ann Arbor Support Group on April 22, 2016
University of Michigan Health Blogs

Lewy Body Dementia (LBD) is a disease that affects a person’s thinking and motor skills. Due to the illness, people with LBD may behave in ways that are different than the past. LBD causes people to absorb information more slowly, have problems with balance, have difficulty handling things, experience hallucinations and sleep more, among other symptoms.

It can be hard for friends and family to understand how someone with LBD feels—and even harder to know what to say or do. Members of the Ann Arbor Support Group for those with LBD have put together some suggestions.

I have Lewy Body Dementia (LBD). Please . . .

Give me some slack. It takes me a little longer to do things because my brain works more slowly, but I’ll get there. Just give me time.

Don’t hover. It’s annoying and sometimes it makes me nervous. You probably wouldn’t like someone hovering over you constantly.

Let me make the mistake—don’t do it for me. I’m sure you want to help, but it can feel demeaning to be treated as though I’m incapable of doing things for myself.

Continue to treat me like I’m part of the family. My illness is not contagious and I still care for you as much as ever. Invite me to things and if I don’t feel like going, I’ll let you know.

Don’t make assumptions—ask me. For example, just because I was tired one day doesn’t mean I’m always too tired to do something. Please don’t think for me—ask me.

Be patient when we’re talking. Sometimes I lose my train of thought, but give me a chance. My thought will come back around.

If you can’t hear me, ask me to speak up. I’m not always aware that my voice may have grown softer. If you don’t tell me, I don’t know you can’t hear me.

Don’t talk about me as though I’m not there. My thinking may be affected but I can still hear. Would you like to be treated as though you didn’t exist?

Remember that the time of day and medications can affect my energy and alertness. Sometimes my meds—and when I’ve taken them—can really impact how “with it” I appear. The effects are as unpredictable to me as they are to you.

A few of the things we appreciate

This list wouldn’t be complete if it only focused on what not to do. Group members recognize how much love and support their family and friends give them. Here are some of the things we appreciate.

I like it when . . .

You help with my medications. I appreciate your helping me stay healthy by organizing my meds and giving me reminders.

You go to doctors’ appointments with me. It’s good to have another set of ears taking in the information and advocating on my behalf.

We’re working as a team. This disease is affecting you as well as me and it’s good to feel that we’re dealing with it together.

You research helpful LBD information and resources. I appreciate the effort you put into looking for new information that can help us deal with this disease.

A final note for caregivers

Be sure to take care of yourselves. It’s great you’re concerned about me, but if you wear yourself out, how will you be able to help me? Remember, we’re in this together.

This list is not comprehensive

It simply reflects the thoughts of the members of the Ann Arbor Support Group. If you are not sure what is helpful, ask your loved one. And keep in mind that things are likely to change as the disease progresses. Use this document to start a conversation with your LBD “teammate.”

Note: This information was created by people with Lewy Body Dementia (LBD) who attend a support group just for them while their care partners meet in another room.

#1 challenge of dementia caregivers is emotional stress, #2 is physical stress

This blog post on Next Avenue (nextavenue.org) reports on a recent survey of 1500 about caregiving for someone with dementia (including Alzheimer’s) that was published last week.

Of the 1500 responding, 250 were currently caring for someone with dementia and 252 people had previously been caregivers.

Nearly all (90 percent) of the dementia caregivers “said their No. 1 challenge was emotional stress. Eighty-one percent cited physical stress; 89 percent said ‘managing my time’ was their biggest challenge.”

Two-thirds of these dementia caregivers feel isolated or alone in caregiving. Half of the dementia caregivers “said they didn’t feel they could talk at work or socially about what they were going through.” Certainly all of this points to the need for local support groups or online support groups where caregivers can share.

Too bad the number of dementia caregivers responding was so low and too bad they didn’t ask what type of dementia the care recipient had. Lumping all dementia types as Alzheimer’s isn’t very helpful to the non-AD community.

Most of the article is copied below.

Robin

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www.nextavenue.org/alzheimers-caregivers-isolated-needing-help/

Alzheimer’s Caregivers: Isolated and Needing Help
A new study reveals most caregivers don’t get enough support from siblings
By Emily Gurnon
Health & Caregiving Editor
June 1, 2017
Next Avenue

Fifteen million Americans care for a loved one with Alzheimer’s or another dementia, and two-thirds of them feel isolated or alone in that difficult endeavor.

That’s one finding of a survey released today by the Alzheimer’s Association, which also revealed that 84 percent of the caregivers would like more support in their efforts.

“It’s a problem that’s only going to get worse,” said Ruth Drew, director of family and information services for the Alzheimer’s Association, in a statement. “As life expectancies get longer and the number of older Americans grows rapidly, so too will the number of individuals diagnosed with Alzheimer’s and family members affected.”

The survey was conducted to highlight Alzheimer’s & Brain Awareness Month in June. The Alzheimer’s Association commissioned the online survey of about 1,500 adults, which was conducted in April. Those responding fell into one of three groups: 250 were currently caring for someone with Alzheimer’s, 252 had previously done so and 1,000 had never given care.

Bringing Families Closer — Or Tearing Them Apart
More than a third of respondents said caregiving for a loved one made their sibling relationships stronger. Bonding was even more true for spouses; 39 percent of the primary caregivers said their relationship with a spouse or partner with Alzheimer’s was strengthened.

“Having the support of family is everything when you’re dealt a devastating diagnosis such as Alzheimer’s,” said Jeff Borghoff, 53, of Forked River, N.J., according to the Alzheimer’s Association. Borghoff was diagnosed with early-onset Alzheimer’s two years ago. “My wife, Kim, has been my rock as we navigate the challenges of Alzheimer’s.”

But other Alzheimer’s caregivers expressed strain in their relationships — most frequently among siblings.

Sixty-one percent of siblings said they didn’t have enough support from sisters and brothers in their caregiving and that it strained their relationship. Among the caregivers who cited strain with siblings, 43 percent said their care was undervalued or underappreciated by the others.

Other Survey Findings
* 90 percent of Alzheimer’s caregivers said their No. 1 challenge was emotional stress. Eighty-one percent cited physical stress; 89 percent said “managing my time” was their biggest challenge.

* 43 percent of caregivers said they frequently feel guilty.

* Two-thirds of caregivers who said the experience strengthened their relationship with their loved one said the caregiving “gave me a better perspective on life.”

* Half of all caregivers said they didn’t feel they could talk at work or socially about what they were going through.

* Asked how being a caregiver has strengthened their relationship with their spouse, 63 percent of respondents said it “reminded me why we love each other.”

* 70 percent of non-caregivers feared becoming a burden on others as they aged, yet only 20 percent said they had talked with their spouse or partner about future care needs.

* Non-caregivers were 52 percent more likely to worry about burdening their spouse or partner than they were about dying.

Financial Costs Are Growing
In an earlier report released in March, the Alzheimer’s Association estimated the cost to families and taxpayers for the care of those with dementia, including Alzheimer’s, totaled $259 billion. That’s the highest expenditure to date. Payments by Medicare and Medicaid make up $175 billion of that total.

That figure does not include the cost of unpaid caregiving.

Out-of-pocket costs for Americans with Alzheimer’s or other types of dementia are nearly five times higher, on average, than for those without those conditions, according to the earlier report.

The earlier report also found that 59 percent of those caring for family members with Alzheimer’s or other dementias rated their emotional stress from caregiving as high or very high.

“The A’s of Dementia” – Amnesia, Atypical Depression, Aphasia, Agnosia, Apraxia

CaregiverTeleconnection is a service offered by WellMed, a charity based in San Anontio.  These are one-hour conference calls (audio only) on topics of interest to caregivers and family members.  You can find information on these conference calls at caregiverteleconnection.org.

In late May 2017, one of the audio talks featured Tam Cummings, a getontologist.  Her topic was the “A’s of Dementia.”  She covered:
* amnesia:  loss of memory; see in Alzheimer’s
* atypical depression:  causing irritability and aggression, often treated with dangerous, ineffective, antipsychotics
* aphasia:  loss of the ability to understand and express speech
* agnosia:  inability to recognize people, objects, sounds, shapes, or smells
* apraxia:  inability to have purposeful body movements

Brain Support Network (BSN) focuses on three non-Alzheimer’s dementias including Lewy body dementia (LBD), and two rare dementias, progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).

Certainly atypical depression, aphasia, and agnosia can happen with any of the BSN disorders.  Amnesia can happen in any of the BSN disorders *if* Alzheimer’s co-occurs.  And apraxia is part of the diagnostic criteria for CBD.

The speaker begins the talk by explaining that there are many types of dementia.  She notes that as more and more of the brain is engulfed in the disease process, neurological symptoms of each type of dementia overlap.  She also explains how damage to specific parts of the brain result in loss of certain skills.

Brain Support Network volunteer Denise Dagan listened to the talk and took some notes.  See below.

Robin

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Denise’s Notes from

The A’s of Dementia
Speaker:  Tam Cummings, PhD
CaregiverTeleconnection (Caregiver SOS) Audio Conference
May 23, 2017

Dr. Cummings began by defining dementia as cognitive deficit that impairs one’s ability to perform the activities of daily living (ADLs), affecting at least two lobes of the brain, progressive, and terminal.  She explained that there are many kinds of dementia and recommends people ask the same types of questions about dementia that we would ask about cancer.
– What type of dementia?
– It is inheritable?
– How do I treat it?

Atypical Depression – not the features are what we visualize as someone who is withdrawn, but angry, annoyed, easily agitated, can be aggressive, possibly increased anxiety.
* Should be placed on antidepressants, but are often on anti-psychotics because of this behavior.
* Anti-psychotics should not be used with those who have dementia because of an increase risk of heart attack and stroke.  Often we think the anti-psychotic is effective because it is sedative, but it takes 3 weeks to actually control behavior.
* Antidepressants also take 4-6 weeks for max efficacy because needs to be ramped up to a therapeutic value.  Antidepressants may be effective for one person but not another so may need to cycle through several to find one that’s works.  Once you find one that works, antidepressants should never be removed, even while on hospice.
* If someone with dementia has other med issues with symptoms that causing anxiety, like the difficulty breathing that accompanies COPD, they should also be on an anti-anxiety medication.

Forms of dementia:
Early onset [diagnosed as early as 20’s, either familial (family groups in Germany & Bolivia) or sporadic (1-off gene mutation)]
Downs syndrome
Regular onset (65-80)
Late onset (80’s-90s)
Lewy Body Dementia (LBD)
Vascular (multiple types)
Fronto-Temporal Dementias (FTDs) (multiple types)
Parkinson’s dementia
Alcohol dementia
Huntington’s dementia
Encephalopathies
Mixed Dementia (Example: Alzheimer’s + Vascular)

7-stages of Alzheimer’s Dementia:
#1 is health
#2 is Mild Cognitive Impairment (MCI) – periodic confusion or forgetfulness, but able to complete all ADLs
#3 is early stage and Dr. should be able to tell which type you have.
#4 is moderate decline – difficulty w/simple math, forget life history details, poor short term memory, inability to pay bills
#5 is moderately severe decline – begin to need help with many day-to-day activities, significant confusion, difficulty dressing
#6 is severe decline – need constant supervision, frequently require professional care
#7 is very severe decline – nearing death, inability to respond or communicate, need assistance with all ADLs

How does dementia cause death?  Brain cell death prevents neurological system and cognition from working properly.  As disease moves into more lobes of the brain, new symptoms (like paranoia in the frontal lobe), will appear.

In Alzheimer’s the first area of the brain damaged is hippocampus, which converts experiences into memories.  When the hippocampus is damaged, it cannot do this, resulting in amnesia.
Symptoms don’t appear until the brain has lost 1/3 of its volume. People can usually still drive and don’t look ill so odd or forgetful behavior may be taken as intentional.  They are not doing it on purpose.  Writing things down so they will remember, yelling at them, etc. will not change their forgetfulness.

From hippocampus, usually Alzheimer’s next affects the temporal lobe (hearing, facial recognition, language, social conversation). Damage to the left temporal lobe reduces the ability to express their difficulty in understanding your instructions, but they can still carry on a very social conversation and cuss.  It appears they are taking in details of conversation when they are really following a social script they learned during early development as a child.

Aphasia – loss of the ability to understand and express speech. Stage 5 understands 1 of every 10 words you say to them.

Frontal lobes – family, education, impulse control, emotional expression, memory, judgement, problem solving, language

Occipital lobes – the visual processing center for facial recognition, depth perception, visual acuity.

Damage to temporal, frontal, and occipital lobes causes Agnosia – inability to recognize people, objects, sounds, etc.  You can see this when they begin to confuse toothbrush and hairbrush, a cordless phone and the remote control, etc.

Everything we can do is built on our memories.  Your brain as a file cabinet.  Each thing we do saved in a separate file.  Example: Driving in general, in traffic, in snow, a clutch, an automatic, in heavy rain, on ice = 7 files on driving.

Your first file was Mom and you built from there in order of your maturation through each stage of life.
Alzheimer’s erases those memories in reverse order.
* When they don’t recognize you as their daughter, they have lost their memories of being the ages during which they raised you.
* When they start saying they want to go home they feel very young. It is an emotional memory so they don’t recognized the house where they grew up when you take them there.  Your response should be to treat them as if they are a small child on a sleepover who wants to go home in the middle of the night.  You reassure them, make them feel comfortable, try to fulfill that emotional memory by ensuring they have their favorite pajamas, sheets, blankets, pillow, smells, etc.

Apraxia shows up when the parietal lobe is affected.  Inability to have purposeful body movements.  They can’t tell they have urinated or defecated.  They can’t control their motor functions so they can’t walk.  Eventually won’t swallow well so they will aspirate and die of pneumonia.  They lose taste, body temperature fluctuates, touch is the last to go so give them something soothing to hold, gentle massage, etc.

Question and Answer

Q:  Caller’s mom believes she is bathing, but isn’t, and resists help bathing.
A:  Culture tells women it is unseemly to be nude around others so they are often more difficult to bathe than men.  Indoor plumbing, may be unfamiliar to her if she grew up without and can’t remember how to use modern facilities.  Try helping her with a sponge bath, like she bathed as a child, instead.  Showers also can be chilly air with too hot water for someone with dementia.  Don’t worry about bathing daily because they’re not doing heavy labor.  Try using a bathing poncho and distract them with chocolate, singing a simple song with you or some sort of hand-held manipulative.  Don’t even mention bathing.  Start with feet and move up.

Q:  Caller wants to inhibit compulsive behaviors.
A:  Answer is these repetitive behaviors, like rubbing the head, rocking, etc. are self-soothing.  Sometimes they are destructive, like picking at things, pulling out eyebrows, etc.  An anti-anxiety medication is the only thing that will stop this because you can only distract them from the behavior for a short time.

Q:  Caller’s husband claps frequently, which disturbs others in the living environment.  Caller says he doesn’t participate in activities offered.  He watches the group activity and claps.
A:  This is self-stimulating, so he’s bored.  Clappers are typically stage 6 and can’t do group activities, but an activity blanket, activity shirt, or activity pillow will give him something to fiddle with.  One-on-one activities will also stimulate him.  If he enjoys cats and/or dogs, he may enjoy a visiting animal or stuffed animal, especially if he had pets as a child because those old memories are the only memories he has left.
Don’t fall for buying a robotic animal.  The sound and movement may be too stimulating.  These work better with young people who have brain injury, rather than dementia.

Caller’s husband complains of headaches, also he can read but not retain or comprehend it.
First you learn the letters, then sound out the words, then how sentences go together, and finally comprehension.  Someone with Alzheimer’s has lost the more advanced reading skills, so they don’t comprehend, but can still read words.   Her husband may also have mixed dementia, like Alzheimer’s + Vascular, mini-strokes (especially if he’s taking blood pressure meds, anti-coagulants, etc.) or he may say he has a headache, but his foot actually hurts and he’s using the wrong word for where it hurts.

Reversal of cognitive decline in ten patients with Alzheimer’s or mild cognitive impairment

There’s an interesting article on Quartz.com from a couple of weeks ago (first published on Aeon.com) about a study done at UCLA where they “treated” ten people with Alzheimer’s Disease or mild cognitive impairment (MCI) with “different lifestyle modifications to optimize metabolic parameters—such as inflammation and insulin resistance—that are associated” with AD.  These modifications, called the MEND protocol (metabolic enhancement for neurodegeneration), included diet change, exercise, stress management, and sleep improvement.  The most common “side effect” was weight loss.

According to the author:  “What they found was striking. Although the size of the study was small, every participant demonstrated such marked improvement that almost all were found to be in the normal range on testing for memory and cognition by the study’s end. Functionally, this amounts to a cure.”

Here’s a link to the research paper titled “Reversal of cognitive decline in Alzheimer’s disease,” from the journal “Aging,” published June 12, 2016:

www.aging-us.com/article/100981/text

According to the research paper:  “It is noteworthy that these patients met criteria for Alzheimer’s disease or MCI prior to treatment, but failed to meet criteria for either Alzheimer’s disease or MCI following treatment. …[Discontinuation] of the protocol was associated with cognitive decline (here, in patient 1).”

Here’s a link to the Aeon/Quartz article:

qz.com/977133/a-ucla-study-shows-there-could-be-a-cure-for-alzheimers-disease/

AWAKENINGS
What happened when Alzheimer’s patients were treated for the diseases we actually have cures for
Written by Clayton M. Dalton, Medical resident, Massachusetts General Hospital
May 05, 2017
originally published at Aeon

Happy reading!

Robin

 

“Boot Camp” Helps Dementia Caregivers Take Care of Themselves

This is a Kaiser Health News article today about a dementia caregivers boot camp.  Caregivers learn how to “manage stress, make their homes safe and handle difficult patient behaviors. They also [learn] how to keep their loved ones engaged, with card games, crossword puzzles or music.”

The author notes:  “Doctors and researchers increasingly recognize that caring for people with dementia compromises the physical and mental health of the caregivers. And that, in turn, jeopardizes the well-being of the people they are caring for. Some studies have shown that the burden on caregivers may increase the likelihood that the loved ones in their charge will be placed in a nursing home.”

If you’d rather listen to this article, click here to listen to a (very similar) 3-minute WBUR radio story:

californiahealthline.files.wordpress.com/2017/05/bur6863296764.mp3

According to the radio story, UCLA wants to start similar bootcamps around the state in the coming year.

The full article is copied below.

Robin

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khn.org/news/boot-camp-helps-alzheimers-dementia-caregivers-take-care-of-themselves-too/‘Boot Camp’ Helps Alzheimer’s, Dementia Caregivers Take Care Of Themselves, Too
By Anna Gorman
May 9, 2017
Kaiser Health NewsLOS ANGELES — Gary Carmona thought he could do it all. He’s run companies and chaired nonprofit boards. But since his wife was diagnosed with dementia, Carmona, 77, has felt overwhelmed.

“I really see myself at times crashing,” he said. “In my mind, I’m saying, ‘You know, I can’t really handle all this.’”

There was the time his wife, Rochelle, wandered outside and fell down. And the time she boiled water and walked away, leaving the burner on.

“I’m always double-, triple-, quadruple-checking everything that she’s around,” he said.

Carmona was among about 25 people who went to a Los Angeles-area adult day care center on a recent Saturday for a daylong “caregiver boot camp.” In the free session, funded in part by the Archstone Foundation, people caring for patients with Alzheimer’s or another form of dementia learned how to manage stress, make their homes safe and handle difficult patient behaviors. They also learned how to keep their loved ones engaged, with card games, crossword puzzles or music.

Doctors and researchers increasingly recognize that caring for people with dementia compromises the physical and mental health of the caregivers. And that, in turn, jeopardizes the well-being of the people they are caring for. Some studies have shown that the burden on caregivers may increase the likelihood that the loved ones in their charge will be placed in a nursing home.

“People with Alzheimer’s who have stressed caregivers have been shown to have poor outcomes,” said Zaldy Tan, the medical director of the UCLA Alzheimer’s and Dementia Care Program who created the boot camp. “Their caregivers have essentially thrown in the towel.”

People with dementia are also more likely to go to the emergency room and be hospitalized if their caregivers aren’t prepared for the job, Tan said.

That’s one of the main reasons why UCLA Health and its geriatrics division started its caregiver boot camps in 2015.

UCLA holds four boot camps a year at community and senior centers around Southern California and hopes to expand over the next year to meet the growing need. About 5 million Americans, 1 in 10 people over 65, have Alzheimer’s disease — a number that could balloon to 16 million by 2050, according to the Alzheimer’s Association.

Similar caregiver training programs have taken place in New Jersey, Florida and Virginia.

Tan started the recent session by explaining the progression of dementia, noting that in its later stages people often don’t remember their loved ones.

“Do they all reach that stage?” asked one woman, who takes care of her sister.

“They do, if they live long enough,” Tan said. “I know it’s heartbreaking.”

He also warned the group that their actions can provoke anxiety or aggression in their loved ones, inadvertently.

“A lot of times, when you see someone shift from being calm to agitated, happy to angry, typically there’s a trigger,” Tan said. “A trigger is just like a trigger in a gun. You push something and then you get a reaction.” He told them that as caregivers they were in the best position to identify and avoid those triggers.

Leon Waxman, who also attended the boot camp, said he tries not to upset his wife, Phyllis. But sometimes she gets mad, as she did that day when he dropped her off for day care while he attended the session for caregivers.

Taking care of Phyllis the past few years has been trying, he said. She can still dress herself, but she gets easily confused and can no longer make decisions.

“The hardest part for me is I don’t have a wife anymore,” said Waxman, who has been married to Phyllis for 58 years. “She’s not the same person she was 10 years ago.”

During the boot camp, recreational therapist Patty Anderson demonstrated a game caregivers could play at home: music bingo. Each square had the name of a song, and she played music.

“What’s this song?” Anderson asked the group.

“Bye blackbird,” one yelled out.

“If you have that one, mark it off,” she said.

Anderson said that even people with dementia can sometimes recognize songs and read their titles. “There’s a lot of good things that come out of this activity — just listening to music, clapping your hands, reminiscing,” she said.

In another room, occupational therapist Julie Manton explained how to prevent people with dementia from falling. She advised the group to ensure their homes have good lighting and the beds have rails, as examples. She also urged them to get rid of throw rugs.

Manton warned the participants that their loved ones might wander off and suggested the use of monitoring devices. “The key thing is to know where your loved one is at all times,” she said.

KHN’s coverage in California is funded in part by Blue Shield of California Foundation.

Suggestion – Approach “aggression” as a “reactive behavior”

In late March 2017, Sage Journals published a research article on the topic of responding to aggression and reactive behaviors in the home.  The abstract and a link to the full article (available at no charge) are copied below.

The authors note:  “Some dementia researchers, service providers and people with dementia have advocated against using the word ‘aggression’ in favor of the language ‘reactive behaviour’ to promote an understanding that such behaviours may be a reaction to a difficult situation such as fear, discomfort, pain or frustration.”

Researchers interviewed former care partners of those with dementia.  The caregivers were asked how they discussed, interpreted, and responded to aggression and reactive behaviors.

Brain Support Network volunteer Denise Dagan read over the article and shared these highlights.

People coming into the home, whether family or in-home care workers, often triggered reactive behaviors.  Care partners were frequently encouraged to institutionalize the care recipient because of reactive behaviors.  They were unable to find respite staff for in-home care who were trained to handle reactive behaviors, and in some cases gave up trying to do so, resulting in ‘burn out,’ and eventual institutionalization of the care recipient.

The upshot is that care partners found by approaching ‘aggression’ as a reactive behavior, by employing their understanding of the care recipient, and by acknowledging the circumstances, the care partners were generally able to address the behavior in a way that calms the care recipient and satisfies the underlying need.

People unfamiliar with the care recipient — especially those who view reactive behavior as ‘aggression’ — are fearful of the behavior and, therefore, unable and unwilling to deal with it.  This is true of family, friends, in-home and institutional caregivers. More education and training is needed to understand these behaviors as reactive, and to address them appropriately.

Sounds like good advice…

Robin

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journals.sagepub.com/eprint/XbyPsrHRu84qmBNM8P4P/full#

Responding to aggression and reactive behaviors in the home
Sage Journals
Rachel V Herron, Mark W Rosenberg
First Published March 26, 2017

Behaviours such as hitting, spitting, swearing and kicking can be a common response to personal, social and environmental challenges experienced by people with dementia. Little attention, however, has been given to how partners in care experience and respond to these behaviours in the home. This paper examines the emerging theme of ‘aggression,’ in seven interviews with nine former partners in care of people with dementia in Ontario, Canada. We explore how partners in care talk about, interpret and respond to these behaviours drawing on recent conceptualizations of structural and interpersonal violence in health and social geography and contributing to the growing body of research on relational care. We discuss the responses to, and implications of, these behaviours at a range of spatial scales and identify important considerations for future research.

Ten warning signs of caregiver stress

This webpage from BrightFocus Foundation (brightfocus.org), an organization addressing Alzheimer’s Disease, has a list of ten warning signs of caregiver stress:
* Denial
* Anxiety
* Depression
* Irritability
* Anger
* Poor concentration
* Withdrawal
* Sleep problems
* Exhaustion
* Illness

How many do you have?!

Robin

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www.brightfocus.org/alzheimers/article/learn-warning-signs-caregiver-stress

Tips & How-Tos
Learn the Warning Signs of Caregiver Stress
Thursday, June 18, 2015
BrightFocus Foundation

Caring for someone with Alzheimer’s disease is an enormous responsibility. Learn how you can watch for the warning signs of caregiver stress and what you can do to help cope with being a caregiver.

There’s an estimated of 60-70 percent of people with Alzheimer’s disease and other forms of Dementia who are cared for in their homes, often by loved ones who are not medically trained. It’s no wonder that caregivers of people with Alzheimer’s disease suffer high levels of stress.

As the disease progresses, your caregiving efforts will require ongoing vigilance and around-the-clock monitoring. You may be called upon to adapt to changes in the person you are caring for and develop new skills to shoulder an increasing amount of responsibility. If your caregiving efforts are surpassing your ability to cope well, it may be because of stress.

What Are the Warning Signs of Stress
Here are some warning signs of stress that a caregiver may experience:
* Denial: Maintaining a belief that the care receiver’s illness is not serious or that it may not even exist.
* Anxiety: Worrying excessively about the future.
* Depression: Feeling hopeless or powerless about the situation.
* Irritability: Blowing up over little things.
* Anger: Feeling angry at inappropriate times.
* Poor concentration: Having difficulty focusing.
* Withdrawal: Feeling alienated from other people and from activities that used to bring enjoyment.
* Sleep problems: Sleeping poorly or too much.
* Exhaustion: Feeling chronically tired.
* Illness: Experiencing health problems. Prolonged stress also can contribute to illnesses such as weakened immune systems, high-blood pressure, and heart disease.

This content was last updated on: Thursday, June 18, 2015

“Caregiver Stress and Burnout: Tips for Regaining Your Energy, Optimism, and Hope”

HelpGuide.org is a Southern California-based non-profit focused on mental, emotional, and social health.  Back in 2012, they published a webpage on “Caregiver Stress and Burnout,” which was recently updated.

The webpage, part of their articles about stress, offers this advice:

“Don’t let caregiving take over your whole life. It’s easier to accept a difficult situation when there are other areas of your life that are rewarding. Invest in things that give you meaning and purpose—whether it’s your family, church, a favorite hobby, or your career.”

Check out all of their advice here:

www.helpguide.org/articles/stress/caregiving-stress-and-burnout.htm

Caregiver Stress and Burnout
Tips for Regaining Your Energy, Optimism, and Hope
HelpGuide.org
Last Updated April 2017

Robin

 

“Why Many People Abandon Friends and Family” (Wall Street Journal)

Though this article is titled “Why Many People Abandon Friends and Family with Dementia–and Shouldn’t,” I think the concepts apply to those with any neurological disorder, not just dementia. Many with neurological disorders are abandoned by their friends and family.  (Or maybe I should say they are abandoned by their supposed friends and family.)

This blog post from a recent Wall Street Journal (wsj.com) is authored by Marc Agronin, MD, a geriatric psychiatrist in Miami.  He says that there’s “a lot that can be done to break negative and avoidant behaviors that impede the care and quality of life for individuals with various forms of dementia.”

Dr. Agronin suggests five basic strategies “to banish the fear and avoidance of individuals with dementia and their caregivers.”  These approaches “can make all the difference by helping them to have greater dignity, well-being and quality of life.”  The five strategies include:

1. Educate yourself about this disease.
2. Recognize the strengths that still exist.
3. Lend a hand [to the person with a disorder and their caregiver].
4. Offer some relief [to the caregiver].
5. Become an advocate for…disease awareness, early detection and research.

Here’s a link to the full article:

blogs.wsj.com/experts/2017/04/23/why-many-people-abandon-friends-and-family-with-dementia-and-shouldnt/

The Experts/Retirement
Why Many People Abandon Friends and Family with Dementia–and Shouldn’t
By Marc Agronin
Apr 23, 2017 10:01 pm ET
Wall Street Journal

Robin

 

Six tips on coping with inappropriate dementia behavior; saying “I’m sorry”

The Capital Gazette newspaper has a column written by Mary Chaput of the Department of Aging and Disabilities of Annapolis, MD.  A recent column had a question about frontotemporal dementia.  Ms. Chaput’s answer applies to dealing with someone with any type of dementia.

In terms of dealing with inappropriate behavior, she offers six tips:

* Don’t take the behavior or comments personally.
* Be empathetic.
* Don’t argue.
* Look for the situation(s) and environmental factors that trigger the behaviors.
* Talk with your family member’s physician about the behavior.
* Keep in mind that this, too, shall pass.

Another question was about saying “I’m sorry” to placate someone with dementia.

Here’s a link to the full column:

www.capitalgazette.com/lifestyle/ph-ac-cc-caregivers-0402-20170401-story.html

Caregivers Corner: Be patient and empathetic when dealing with frontotemporal dementia
by Mary Chaput, Correspondent
Capital Gazette
April 1, 2017

Robin