Santa Clara County & San Mateo County Families in Need — Respite Funds Before 6-30-17

This email is ONLY for families who meet this criteria:
* live in Santa Clara County or San Mateo County
* have a loved one with dementia (LBD, PSP, CBD, etc)
* have a financial need  (On a temporary basis, this is somewhat flexibly defined.)
* have a way to spend caregiver respite funds before June 30th

Caregiver respite funds can be spent on in-home care, adult day care, or temporary facility care.

These funds must be spent by June 30th!

Generally the caregiver respite grants cap out at $1K but I think there’s even some flexibility with that.  The funds must be paid directly to the care provider, not the family.

Even if you might have unpaid in-home care bills (or adult day care bills) dating back to July 1, 2016, these are eligible for the respite grant.

The Alzheimer’s Association is distributing the funds.  Please contact our friend Alex Morris at 408-372-9940, [email protected].  She would be happy to hear from you to know that these funds can be used before they vanish.

Please let me know if you were able to take advantage of this!

Robin

“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.