A person living with
Alzheimer’s Disease (AD) and related dementias is first a person,
and only then someone with a disease. There
is no known prevention or cure for AD, but there are treatment options for cognitive and behavioral symptoms. Social relationships and supports can be seen as forms of non-drug treatment.
Because relationships are
built on trust, it is disturbing to hear and read advice to engage in therapeutic lying as a way to connect with persons with dementia.
In “Ten real-life strategies for dementia caregiving,” Family Caregiver Alliance
“Therapeutic Lying Reduces Stress. We tend to be meticulously honest with people.
However, when someone has dementia, honesty can lead to distress both for us and
the one we are caring for. Does it really matter that your loved one thinks she
is the volunteer at the day care center? Is it okay to tell your loved one
that the two of you are going out to lunch and then “coincidentally” stop by
the doctor’s office on the way home to pick something up as a way to get her to
the doctor?"
In “A Dark Side of Dementia Care,” geriatric psychiatrists James Ellison and David Hsu explain:
“Therapeutic lies, or fiblets, are often used to reduce
stress and manage the anxieties and disruptive behaviors of demented
inpatients, long-term–care residents, or the elderly who are cared for at home,
who are not reassured by simple distraction or redirection . . . Lies that
reduce suffering and stress in patients unable to fully appreciate the cause of
distress can be beneficial. Clinicians sanction their use in dementia care and
see them as a manifestation of the ethical imperatives of beneficence and
non-malfeasance.”
Amy Tan called her mother’s dementia “a truth serum,” which enabled getting
to know her mother on an emotional level (“Even when you're losing your memory and you're
old, you go back to that childhood part of you and those memories, those
emotions and what made you are still
there") and served as inspiration for her fourth novel, The Bonesetter’s Daughter (2001).
However, she told The Guardian
about
moving her mother into an assisted-care residence through subterfuge: "We told her it cost $750 a month - her
social security - and she thought it was a bargain. In all the places she's
lived, she was the happiest there. She felt safe. When she was dying those last
three weeks, we all moved in, 18 or 20 of us, playing card games and mahjong,
eating takeout food, taking turns to stay overnight."
In September 2014, Mental
Health Foundation published a literature review on Dementia—what is truth? Exploring the real experience of people living with more severe dementia. This study found that while lying to a person
living with dementia is considered unethical and damaging to the person’s right
to autonomy, the practice of lying is pervasive and sometimes considered
justifiable in dementia care. It also
noted alternatives to therapeutic lying to persons with dementia include
holistic approaches like Validation therapy, Habilitation therapy and Functional analysis of needs.
In The Validation Breakthrough: Simple Techniques for Communicating with
People with Alzheimer’s and Other Dementias (3rd edition, 2012), Naomi Feil, MSW, focuses on
empathetic listening, rephrasing, mirroring, meeting people where they are
(including their view of reality), being aware of their emotional and
psychological needs. Validation theory is based on the idea that very old people, who have ignored developmental life
tasks in earlier stages in their life, enter a period in which they feel a need
to resolve unfinished life tasks (e.g., Erikson’s ego integrity versus despair,
Maslow’s self-actualization)
before they die in peace. Neurofibrillary tangles and senile plaques are found in brains of all people with AD, as well as people who do not exhibit any signs of dementia or disorientation. Feil has observed that many people over age
80 survive damage to brain cells and remain orientated, so they do not need Validation because they
validate themselves. Disorientation in very old people may
represent their struggle to restore the
past to heal old wounds, though they have lost memory and present-day
factual thinking; and despite disorientation, people retain universal human
need to belong, to find identity and to express themselves. Validation allows people to be who they are.
Feil does not endorse
patronizing with therapeutic lies (pretend to believe what disoriented persons
says is true) to placate a person with dementia. Instead, she advocates the real work of exploring the depth of an older
person’s personal reality, as there
are many levels of consciousness, by asking open questions (starting with who, what, when, where, how) to
stimulate conversation without judgment (avoid asking why, which is a request
for explanation for our benefit, and does not help person express self). Feil insists that validation practitioners always tell the truth and are honest
because very old people, no matter how disoriented, know what is truth, who is
honest and who is lying; if you lie, an old person may quiet down but not trust
you.
This month I attended a
free documentary screening of Glen
Campbell: I’ll Be Me, hosted
by Elder Care Alliance,
a non-profit organization of senior living and dementia care programs in the
San Francisco Bay Area. The heartwarming
documentary opens with Glen and his fourth wife Kim watching home movies: Glen
doesn’t recognize his younger self and former wives from his previous three
starter marriages, so Kim lets him know "who's that" and Glen exclaims, “I’ll be me!”
In 2011, Glen went public with his AD diagnosis to raise awareness and then launched an impressive 151-stop Goodbye Tour with his family (two sons and daughter
played in band) over an 18-month period that ended in Napa
Though I hadn’t heard Glen Campbell’s music for some time, I could recall Jimmy Webb’s catchy lyrics in Wichita Lineman (“And I need you more
than want you, and I want you for all time”) and Galveston (“I am so afraid of dying before I dry the
tears she's crying”).
After the Goodbye Tour
ends, Glen’s
daughter Ashley testified before Senate hearing about the devastating
impact of Glen’s
AD on family and need to end AD. This candid documentary also showed his off-stage behaviors: licking his plate, angrily accusing his neighbor of stealing his golf clubs, forgetting he received Lifetime Achievement Award at
Grammy’s the night before, etc.
Earlier this year,
Alzheimer’s Association honored Glen Campbell with its inaugural Glen Campbell Courage Award for going public and advocating to find a cure for AD. At 78 years of age and at the 6th stage of Alzheimer’s, he moved to a memory care facility.
Elder Care Alliance, which utilizes I’m Still Here: A New Philosophy of Alzheimer’s Care (2009) in its dementia care program, also distributed copies of this book by John Zeisel, who holds a Ph.D. in sociology and environmental design
background. In his first chapter,
Embracing Alzheimer’s, Zeisel suggests that treating people
with AD "the old way" as people who can live active lives in society was often better, rather
than as patients being institutionalized and hidden from society. To build healthy relationships with those
living with AD, one has to connect through those capacities and facilities that
don’t diminish with the progression of AD, or at least diminish most gradually
(e.g., hardwired skills like facial expressions, responses to touch, singing,
landmarks for way-finding). His message
throughout the progress of AD is: “I’m still here, please help me, I love you,
and don’t give up.”
Zeisel provides the
following five rules of communication:
- Hear and respond to the other person’s
“reality”
- Be
honest: by being yourself,
expressing own reality; honesty includes responding with empathy to
person’s definition of reality
- Always address the person directly
- Don’t test! Give answers (e.g., “I am your
daughter”) rather than ask questions (e.g., “remember me?”) to make person feel competent and in
control
- Don’t say “don’t”: divert and redirect instead—kinder
and more effective to change the subject (divert from inappropriate
action) so that the person focuses on something else, and then suggest
another, safer alternative (redirect)
Next, Zeisel provides seven rules of relationship building to
understand and embrace the other person for who they are by changing your own
behavior:
- Don’t be a rock—respond, don’t react
- Be
present!
- Do as little as possible to help the person be
successful—but leave nothing undone
- Use
all the senses: Person with
AD gets headache from too many words because brain’s language centers
(Wernicke’s and Broca’s areas) aren’t working well. Instead of words only, use sound, sight,
taste, odor and touch to communicate.
- Find
the person’s self-expression
and invoke them through shared activities engages that part of a person
that relaxes him/her
- Principle of “I” in the “We”: understand who we are within greater
collective whole
- Follow
the flow of the day:
providing person a daily flow of things to do that engages mind, body and spirit helps live a more normal
life—“the more natural the day, the more the day is treatment for the
disease”
Zeisel reminds us that the
person living with AD is the same person (before the diagnosis), but just can’t
draw on life experiences and express them in the same way so we can take the initiative. More tips:
- Amygdala
emotions: Ask person with AD
for expression of emotions (how they feel about topic) versus cognitive
data.
- Memory
joggers: In conversation,
bring up topics (particular aspects of life of person with AD) to trigger access to memories.
- Be conversation generator yourself: be prepared to talk, even if you have to carry conversation as monologue, because don’t expect person with AD to draw on memory bank of topics and recent experiences to generate conversation.
Accepting and embracing
the changes that come with living with AD is a demonstration of unconditional
love for personhood.
Documentary Filmmakers Take Sensitive Approach to Illness and Death
ReplyDeleteDECEMBER 4, 2014
Andrew Barker
It’s hard to think of a more delicate proposition for a documentarian than filming a subject in the final stages of terminal illness. As a filmmaker, one needs to be unsparing in documenting the reality in front of the camera, yet also have a responsibility not to exploit subjects, or intrude on a family in moments of such grief and difficulty.
But when done right, the result can be a gift to both audiences and the subjects, and three documentaries this year offered master classes in striking that balance: Steve James’ “Life Itself,” which chronicled Roger Ebert’s final days with his wife, Chaz; “Glen Campbell: I’ll Be Me,” in which James Keach followed the star on his final tour after being diagnosed with Alzheimer’s; and “Keep on Keepin’ On,” Alan Hicks’ film on the mentorship between nonagenarian jazz trumpeter Clark Terry and blind young pianist Justin Kauflin.
For Keach, improvisation became key, as he started filming with the intention of following Campbell on tour for five weeks. He ended up staying on the project for 2½ years, capturing 151 shows, as well as numerous trips to the hospital and personal moments involving Campbell, his wife, Kim Woollen, and children, who played with him on tour.
“It was a natural progression, sparked by the fact that Glen and Kim asked us to stay on,” Keach says. And in a strange way, his position as a dispassionate outsider in intimate moments — he didn’t know Campbell prior to production — strengthened the bond between him and his subject.
“Glen and I became very close just because I was someone who would talk to him directly about having Alzheimer’s,” he says. “It’s like when somebody dies, and instead of pretending it didn’t happen, you say, ‘You must really miss them.’ You talk about it, you let the elephant enter the room. I would start off conversations by saying, ‘So, what did you forget today, Glen? How’s the memory?’ And at first people would be like, ‘What are you doing, man? That’s really uncomfortable.’ But Glen would say, ‘No, I’m fine with this.’
“Because he knew what he was up against. He knew what Alzheimer’s was going to do to him, but he wasn’t afraid of it.” …
Common to all three projects is the obvious sense of trust required, and the need for a filmmaker to repay it.
“The family trusted that we’d make the right choices, and I think we did,” Keach says, noting the special significance the film has achieved for Woollen. “Glen isn’t really able to communicate with her anymore. He can say a few things, and he still recognizes her, but she told me she feels like the film is a warm blanket wrapped around her. She said, ‘I can watch it over and over because up there on the screen he’s with me.’ ”…
http://variety.com/2014/film/awards/documentary-filmmakers-take-sensitive-approach-to-illness-and-death-1201370338/
A Provocative New Way To Think About Dementia
ReplyDeleteHoward Gleckman
12/29/2014 @ 10:23AM
…Dr. G. Allen Power’s provocative message. He wants us to stop thinking that people with dementia are victims of a terrible debilitating disease that destroys their memory and perception. Instead, Power argues, dementia is “a shift in the way a person experiences the world.”
In his new book Dementia Beyond Disease, Power argues that people with dementia are not psychotic or delusional. Rather, they see the world differently than others. Power’s goal is not to treat a disease. It is to improve the well-being of those who have it. And unlike drug therapies, which have been high-cost failures, Power identifies dozens of ways that may enhance the lives of those with dementia.
It is how to overstate how radical this is. It turns the worldview of much of the Alzheimer’s establishment completely on its head. And it attempts to reframe how family caregivers (Power calls them partners) respond to their loved ones.
Dr. Power, who I have gotten to know through his work with the Eden Alternative group, is a passionate voice for those with dementia. A board-certified geriatrician and Associate Professor of Medicine at the University of Rochester, Al has spent two decades working in long-term care and rehabilitation, most recently at St. John’s Home in Rochester, N.Y.
Dementia Beyond Disease is his second provocative look at memory loss. In 2010, Dementia Beyond Drugs challenged the overuse of anti-psychotic drugs in nursing homes. His ideas, considered radical at the time, have helped change the way many facilities care for those with memory loss.
In Dementia Beyond Disease, Power takes those arguments even further. He is, for instance, an outspoken critic of segregated dementia units (often called memory care) that have become the standard in many residential care facilities. At the same time, he offers many practical ideas for helping those with dementia.
Imagine someone who is extremely agitated. You can control her aggression with medication. Or you can identify the cause of her upset, and change it. Maybe she is in pain, or troubled by loud noises. She may not be able to describe in words why she is distressed. But if you know what to look for, you can learn from her body language.
Music is another example. Dan Cohen’s Music and Memory Project has had remarkable success engaging some people with advanced dementia through music (if you have not seen the award-winning film about this project, called Alive Inside, you should). My wife, who is a hospice chaplain, can attest to this. She often uses hymns and other religious music to reach people who are otherwise uncommunicative.
I recently wrote an article about a woman who is struggling to care for her father who has dementia. By trial and error, she has learned some of the lessons Power teaches, including the magic of music. When her dad seems especially troubled, the staff at his residential care facility plays some of his favorite songs. And it usually calms him.
Power is not the only one urging us to rethink dementia care. Sr. Peter Lillian DiMaria of the Avila Institute of Gerontology in Germantown NY, has been training long-term care professionals in similar techniques for years.
More than 5 million Americans have some form of dementia, yet we still know remarkably little about the science behind these diseases (and keep in mind that Alzheimer’s is just one of dozens of dementias).
With the help of people such as Al Power and Sr. Peter, we are learning about how to open doors for people with dementia. You may not agree with everything Power has to say, and research remains preliminary and uncertain on some of the ideas he espouses. But Dementia Beyond Disease will make you question what you thought you knew about these diseases. And, given how poor most dementia care is, that’s a good thing.
http://www.forbes.com/sites/howardgleckman/2014/12/29/a-provocative-new-way-to-think-about-dementia/
5 Tips for Talking With a Person Who Has Alzheimer's
ReplyDelete01/14/2015
Marie Marley
"Tell me about your daughter," I said, using an open-ended question because they have no right or wrong answers. That's a tip I picked up from The Best Friends Approach to Alzheimer's Care by Virginia Bell and David Troxell. . .
When relating to a person with Alzheimer's there are many guidelines to follow. I'm going to discuss five basic ones here:
Don't Tell Them They're Wrong About Something: To let the person save face, it's best not to contradict or correct them if they say something wrong. There's usually no good reason to do that. If they're alert enough, they'll realize they made a mistake and feel bad about it. Even if they don't understand their error, correcting them may embarrass or otherwise be unpleasant for them.
Don't Argue With the Person: It's never a good idea to argue with a person who has dementia. First of all, you can't win. And second, it will probably upset them or even make them angry. I learned a long time ago, when caring for my beloved Romanian soul mate, Ed, the best thing to do is simply change the subject -- preferably to something pleasant that will immediately catch their attention.
Don't Ask if They Remember Something: When talking with a person who has Alzheimer's, it's so tempting to ask them if they remember some person or event…Of course they may not remember. Otherwise, they wouldn't have a diagnosis of dementia. It could embarrass or frustrate them if they don't remember. It's better to say, "I remember that we had candy the last time I was here. It was delicious."
Don't Remind the Person that a Loved One Is Dead: It's not uncommon for people with dementia to believe their deceased spouse, parent or other loved one is still alive. They may be confused or feel hurt that the person doesn't come to visit. If you inform them that the person is dead, they might not believe it and become angry with you. If they do believe you, they'll probably be very upset by the news. What's more, they're likely to soon forget what you said and go back to believing their loved one is still alive. An exception to this guideline is if they ask you if the person is gone. Then it's wise to give them an honest answer, even if they will soon forget it, and then go on to some other topic.
Don't Bring up Other Topics That May Upset Them: There's no reason to bring up topics you know may upset your loved one. If you don't see eye-to eye on politics, for example, don't even bring it up. It may just start an argument, which goes against the second guideline above. You won't prevail and it's just likely to cause them anger and/or frustration.
So. there you go. A few guidelines for visiting. I hope these will be helpful to you in visiting your loved one and enriching the time you have together.
http://www.huffingtonpost.com/marie-marley/five-tips-for-talking-wit_b_6469022.html
People with Dementia May Have Hidden Talents
ReplyDeleteBy Bahar Gholipour
January 29, 2015
A 60-year-old businessman lost his job and much of his personality to dementia…known as frontotemporal dementia (FTD), in which the frontal and temporal lobes of the brain shrink. As a result of the condition, J.K.'s personality gradually changed. He started behaving inappropriately in social situations, and began having language and memory problems. But thanks to encouragement from his wife, he took up learning to play a musical instrument.
He even ended up outperforming other, healthy students in his saxophone class, according to the report, published Jan. 14 in the journal Neurocase.
The case shows that people with dementia may have hidden talents and abilities that can emerge when given the opportunity, said Dr. Daniel Potts, a dementia specialist in Alabama and a member of the American Academy of Neurology. Potts was not involved in the man's case but called it"fascinating."
"If we really give people an opportunity — and don't give up on them, and try to affirm their traits and personhood — many of them may be able to do things like this." [16 Oddest Medical Case Reports]
FTD is a type of dementia that tends to affect people who are younger than those affected by other types of dementia, such as Alzheimer's.
Potts said that FTD is also different from Alzheimer's in that, "rather than short-term memory loss, you have more of a behavioral problem that manifests itself as inappropriate social behavior, disinhibition, withdrawing from normal social engagement, and you get some language problems as well."
However, patients with FTD may keep skills they've learned, such as playing games, and even show an artistic enhancement of their visual or musical abilities, as previous studies have reported.
"The thing that was different about this case was that this individual took up playing a musical instrument during the time after he was diagnosed with FTD and had never done that before — and I think this makes this case unique," Potts said.
In contrast to skills like language, movement and memory, the ability to both appreciate and perform music involves a large proportion of the brain, so diseases that involve only certain parts of the brain may not affect all areas involved in music, Potts said. People may get even better at art because, as the parts of the brain that are involved in inhibitions begin to deteriorate, their artistic creativity may be unleashed, he said…
At age 59, after receiving a diagnosis of FTD, J.K. began to take saxophone lessons for 2 hours daily, because his wife thought that playing a musical instrument would soothe his abnormal behaviors. Previously, he had not had any musical education.
"At first, it took a long time for him to learn how to read musical notes and to play the saxophone. However, his skills progressed, and soon, he was able to play new, unfamiliar songs every two to three months," the researchers wrote in their report.
When examined at age 61, three years after the start of his symptoms, J.K. was found to have some behavioral problems, but his aggressiveness and anxiety were less severe than when his condition was first diagnosed, according to the report.
Learning to play an instrument might have been therapeutic for J.K., Potts said.
"I think that it probably gave him a way to express himself when he was losing his language abilities, when he was no longer able to get his emotions out in a proper way, perhaps," Potts said. "Maybe this gave him an outlet to deal with some of that."
Giving dementia patients a chance to explore their artistic talents could be beneficial for both patients and their caregivers, Pott said. It may be hard to maintain a relationship with someone who has such cognitive problems, but people may be able to connect through music and art, he said.
http://www.livescience.com/49634-dementia-saxophone-strange-case.html
The toll Alzheimer’s disease has taken on the Rhinestone Cowboy
ReplyDeleteBy Pamela Yip
15 February 2015
Alzheimer’s disease plays no favorites.
It’s the Great Equalizer.
Just ask Kim Campbell, wife of singer Glen Campbell, who was diagnosed with the disease in 2011 and now lives in a memory care community in Nashville.
“Physically, he’s really strong and healthy, but cognitively, he’s not doing so well,” the 56-year-old Kim said in an interview. “He’s in the later stages of Alzheimer’s. He’s lost his ability to communicate. He doesn’t understand anything anyone is saying to him, but he understands the universal languages of smiles and hugs and sometimes music.”
Kim was in North Texas last week to speak to senior living health professionals at a management symposium presented by Irving-based Greystone, which advises senior living communities.
Glen, 78, was first diagnosed with mild cognitive impairment in 2009, and his decline has been slow, Kim said.
“In the early and middle stages, he was very, very high-functioning because he had the support that he needed to maintain,” she said. “The doctors told us that because he played music — music actually engages all of the brain and everything up there in all the different regions are firing all at the same time and it seems to help the brain globally.”
Experts say for seniors with memory ailments, music can trigger intense emotions and memories in ways that other tools can’t.
“Music has power, especially for individuals with Alzheimer’s disease and related dementias, and it can spark compelling outcomes even in the very late stages of the disease,” says the Alzheimer’s Foundation of America. “When used appropriately, music can shift mood, manage stress-induced agitation, stimulate positive interactions, facilitate cognitive function and coordinate motor movements.”
The Campbells wanted to use Glen’s music to bring awareness to Alzheimer’s disease, so they went on a national tour in 2011 — the year he was diagnosed — and on a United Kingdom tour that same year.
They were upfront with fans about Glen’s ailment.
“We talked about we need to let the fans know just in case he repeats himself a lot or there’s some odd behavior,” Kim said. “We wanted to make them aware and let them know what was going on and hopefully, they would be supportive, and they were.”
The Campbells also have drawn support from their musician children…
Glen recently picked up his latest Grammy Award for Best Country Song for “I’m Not Gonna Miss You,” which he co-wrote with Julian Raymond for the 2014 documentary Glen Campbell: I’ll Be Me.
The song is up for an Oscar for best Original Song.
“The film is about family, love, supporting one another,” said Kim, who accepted the Grammy on her husband’s behalf. “Glen is such a hero for allowing himself to be filmed while having Alzheimer’s to bring awareness to this disease. It’s making the best out of a bad situation.”
She’s learned to depend on family and friends for help in caring for Glen.
“The main thing is that you cannot do this alone,” Kim said. “No one can take care of somebody who has Alzheimer’s by themselves. If you do, the disease will probably take you down as well.
“A lot of times, caregivers who are trying it on their own become so depressed and isolated and they neglect their own health that they become ill as well.”
…Kim notes that Alzheimer’s is a progressive illness. “I just never know what the next day is going to bring.”
… “I start trying to think, ‘How can I be a blessing to Glen today and the other residents of there as well?’ I try to minister to them everytime we go see Glen.”
http://www.dallasnews.com/business/columnists/pamela-yip/20150215-the-toll-alzheimers-disease-has-taken-on-the-rhinestone-cowboy.ece
Early Signs Of Alzheimer's Disease Found In Patients As Young As 20
ReplyDeleteCassie Shortsleeve
March 2, 2015
Alzheimer’s disease may not be just for grandparents to worry about: New groundbreaking new research from Northwestern University has found that amyloid protein — a hallmark of the devastating disease — starts accumulating in brain neurons of people as young as 20 years old.
Scientists believe this is the first time that such changes have been noted in human brains so young. In the study, lead researcher Changiz Geula and his team from the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern University’s Feinberg School of Medicine and team analyzed neurons from the brains of 13 “normal” young people ages 20 to 66; 16 people ages 70 to 99 without dementia; and 21 people with Alzheimer’s, ages 60 to 95.
“It was the age that really that surprised us,” Geula tells Yahoo! Health. “In the young adults, we already see accumulation of amyloids.” This becomes worrisome when amyloid clumps grow in size and abundance. The difference between old and young in this study: While the amyloids themselves were present in younger people — and clumps were present as well — there was more clumping in the aging and Alzheimer’s population, says Geula.
“What this means is these neurons are susceptible to accumulate at a young age, but that the clumping really occurs in aging. During life, the substance needed to make clumps is available. And if you have susceptibility to form clumps, this could worsen.”
So what does this mean for you? First, know this: “In this study, we didn’t have a huge number of brains,” says Geula. “And this doesn’t mean that because young people have a measure of amyloids that everyone is going to get Alzheimer’s. It’s not an alarm.”
But there are susceptibility factors (that science knows a lot about) — and protective factors (that science doesn’t know as much about) — when it comes to Alzheimer’s, Geula says. “We have known for a while that if we want effective therapy for Alzheimer’s, we have to start early. What these findings suggest is the earlier the better.”
So start today and protect yourself — and your brain —with these techniques, no matter your age.
1. Kick bad habits—stat. “We know that general cognitive aging and Alzheimer’s aging can be enhanced by many things — most importantly, general health,” says Geula. In fact, many health factors — diabetes, heart disease, pulmonary function, and obesity — can increase your risk of the disease.
2. Clean up your diet. Healthy habits like eating a Mediterranean diet (rich in nuts, greens, whole grains, fruits and veggies, poultry, and olive oil) have been linked to better cognitive function and a lower risk of Alzheimer’s.
3. Work it out. Exercise has been shown to enhance cognitive abilities in everyone, including the old and even the Alzheimer’s population. “Some animal studies show that the total amount of amyloid can be reduced in animals through enhanced exercise and enriched environment,” says Geula. And not only can exercise keep Alzheimer’s and dementia at bay, some research suggests it can even turn it around. When people with mild cognitive impairment walked on a treadmill for 30 minutes a day, four days a week for 12 weeks, people improved their neural efficiency using fewer mental resources to perform the same task.
4. Better your brain. Mental exercise — keeping your mind engaged and challenged through a variety of exercises — can also help. Research suggests that people who play cards, do crossword puzzles, and challenge themselves mentally on a regular basis are at a lower risk for developing the disease than those who don’t. And thinking on the bright side actually does matter: Negative thoughts can hinder your brain’s ability to think straight and form memories, according to research from King’s College in London.
https://www.yahoo.com/health/early-signs-of-alzheimers-disease-found-in-112519622602.html
Glen Campbell's Life Living With Alzheimer's
ReplyDeleteMay 1, 2015, 4:11 AM ET
By MICHAEL ROTHMAN
Glen Campbell is a Grammy-winning country music icon, but his wife Kim Campbell says one of the most important things the legend has done in his life is to "help remove the stigma of Alzheimer's disease."
Glen was diagnosed with the disease in 2011, went public and embarked on a farewell tour with his family, including his wife and their three children -- Cal, Shannon and Ashley -- which ended in 2012. Kim said the experience touring with their father only brought the immediate family closer together and really shed light on the disease.
"I'm so proud of the kids and the time we had on the road during the goodbye tour," she told ABC News. "It was such a gift to us to be able to celebrate his life. They learned so much from him ... not only as a musician, but as a human being."
The tour was featured in the documentary "Glen Campbell…I’ll Be Me" and Kim said…”The documentary is uplifting and positive."
That's the message Kim wants to spread.
"A lot of people are afraid if it's Alzheimer's in the subject, it's going to be very depressing," she said. "It's something people have kept under the covers and felt like they needed to be discrete about, but it's a disease that affects 5.4 million people in the United States and almost every single family is touched with it, and it's nothing to be embarrassed about. People rally around you and want to give you all the support that's possible."
For that reason, she has continued her husband's work of raising awareness for the disease, while he cannot.
…With Campbell now in a long-term care facility since March of last year, the support community has helped Kim exponentially, as well as her husband.
"It's really sad to be losing the one you love day by day, drip by drip, there's nothing you can do about it though. I go to bed depressed, I wake up depressed, but you have to tell yourself 'I have so much to be thankful for.' ... I'm visiting Glen everyday in the memory support community, I know all the other patients and their families, we are a community and I try to be a blessing to them everyday too."
She continued, "I have been blessed with such a great family ... when the doctors advised me Glen would really benefit from being in a support community for people with cognitive issues, I tried it out and it made a big difference for his happiness and his well-being. We can't do anything about the disease, but we can try and make life as good as possible. It's helped me too with my depression, because now my support team is even bigger. That's given me the piece of mind to be able to go out and speak about it."
http://abcnews.go.com/Entertainment/glen-campbells-life-living-alzheimers/story?id=30625667&WT
Glen Campbell's Daughter Ashley Details Dad's Declining Health
ReplyDeleteStephen L. Betts
June 26, 2015
The influence that Glen Campbell has had on artists of every genre is undeniable. But with the decision of his family to go public with the legendary entertainer's 2011 Alzheimer's disease diagnosis, his extraordinary legacy has become even more significant and farther-reaching.
…Glen Campbell: I'll Be Me is a heartbreaking but celebratory document of the musician's final album and his Goodbye Tour, …bravely details the Campbell family's coming to grip with the Alzheimer's diagnosis…
"It's a great way to get the message out there," Campbell's daughter, Ashley Campbell, tells Rolling Stone Country of I'll Be Me. "The film is definitely not what you think of when you think of a documentary about Alzheimer's. I think the beauty of it is that my dad is such a personable person. He's so charismatic and funny and just real, and it really shines through in this film. He puts a real human face on this disease that a lot of people are dealing with that we don't really hear about it a lot in the media. That's the conversation we're hoping to start, that it's real and it happens to people we love and that we need to personalize it." …
Acknowledging the widespread effect Alzheimer's has had on millions around the globe, Ashley says, "Everyone goes through a similar process and through this ongoing grief that happens as we take care of our loved ones with Alzheimer's. When people see the film they talk to me afterwards, they're just so relieved that it's not just them going through these things. They're not alone in this."
Although she reveals that her father, who is currently at a memory care facility in Nashville, is progressing into the late stages of the disease, Ashley says her dad is physically very healthy, adding, "He's calm most of the time, which is kind of all you can ask for in the late stages, that he's calm, content and happy and feels a lot of love in his life. Because he has aphasia, he can't really communicate very well. He doesn't really understand anything that anyone tells him anymore and he can't communicate with us very well. But he understands body language and sometimes very small words."
While the aphasia has robbed Campbell of the ability to communicate, his daughter says he still comprehends things such as like hugs and taste and sometimes even music, although the latter can prove difficult.
"Overall, he's just very happy and content in his own world and we just love hanging out with him. It's all we can ask for," she explains. "At least he's not aggravated and scared and confused all the time. He's happy and content and smiles most of the time. He still makes jokes and likes to play around, even though the jokes don't make any sense and it's gibberish; he still goes through the motions and it's still him. Like, he'll take a French fry and start smoking it like a cigar and give us all that 'joke' face. He likes to fake you out like he's handing you something, when you reach out for it he pulls it back and just laughs. He still likes to make people laugh."
In spite of tabloid reports of a rift between Campbell's wife and family and his older children from previous marriages, Ashley insists that unlike some of those stories have suggested, "No family member has ever been denied a visit to my dad. Sometimes we have restrictions as far as for his privacy and safety, like restricting photos taken or items brought in, but no family member has ever been denied….
http://www.rollingstone.com/music/news/glen-campbells-daughter-ashley-details-dads-declining-health-20150626
Leading Alzheimer’s group splinters over claims of misplaced priorities and lavish spending
ReplyDeleteBy JUDITH GRAHAM
MARCH 2, 2016
The Alzheimer’s Association, one of the country’s most powerful disease advocacy groups, is rupturing amid an escalating dispute over its priorities: raising money for a future cure versus supporting patients and families struggling with the disease right now.
Prominent chapters in Los Angeles, New York City, San Diego, and elsewhere have pulled out of the national association in recent months. The defectors accuse administrators of spending lavishly on salaries and travel, retaliating against breakaway chapters, and focusing too much on raising money for research and lobbying at the expense of local programs, such as exercise classes and outings for Alzheimer’s patients. The depths of the discord emerged in interviews by STAT with more than a dozen current and former association officials.
“Their message revolves to a large extent around fear: ‘This is such a terrible disease, and it has to be eliminated,’” said Christian Wells, president of the former chapter in Austin, Texas, which broke from the national association in January. “We prefer a message of hope: ‘There’s life with and beyond Alzheimer’s.’”
The tensions among groups that collectively raise more than $300 million a year comes at a time of rising concern about Alzheimer’s, which affects more than 5 million Americans today and is expected to afflict more than 10 million by 2050. Its long, painful trajectory makes it the most expensive disease in America.
In response to the growing number of patients with dementia, the national Alzheimer’s Association is moving to centralize and standardize its programs from coast to coast. It’s requiring all local chapters to dissolve their boards of directors and transfer their assets to the national organization by July 1. All major decision-making will now come out of headquarters…
But local activists worry that the new structure will hamper their ability to respond to unique community needs…
Chapters have been especially exasperated by the national association’s decision to funnel phone calls from people seeking help to a 1-800 hotline in its Chicago headquarters, rather than handling them locally. They say families in crisis need to connect with local advocates who can help them navigate local resources — not a central bureaucracy…
The San Diego chapter last year compiled data from the Alzheimer’s Association’s tax forms from 2005 to 2013.
According to that analysis, national spending on travel quadrupled and executive salaries nearly tripled during the nine-year period. Total 2013 compensation for Harry Johns, the association’s chief executive officer, reached $2.8 million — one of the highest salaries for a nonprofit executive in the nation.
Rent for an office on Chicago’s swank Magnificent Mile nearly tripled, the analysis found.
Meanwhile, grants to researchers declined to $13 million a year from $21 million, a drop of 38 percent.
…The organization has created a national task force to evaluate programs and decide which are worth replicating across the country. Top priorities include helping families coordinate care and training caregivers to handle erratic behavior. The goal is to “really have an impact” by identifying best practices, said Stacy Tew-Lovasz, executive director of the St. Louis chapter, which is sticking with the national group.
The task force is also drafting standards for delivering dementia care in nursing homes and other health-care settings, said James Wessler, who runs the association’s affiliate in Massachusetts and New Hampshire.
http://www.statnews.com/2016/03/02/alzheimers-association-split/
SF Police handling of Alzheimer’s patient debated
ReplyDeleteBy Vivian Ho
August 10, 2016
…San Francisco police officers who responded to a physical altercation between two residents of an elder-care home handcuffed a woman who has Alzheimer’s disease and little ability to communicate before taking her away in a patrol car over the objections of the home’s staff, records show.
The decision last month to place 72-year-old Carol King, who suffers from dementia, under an involuntary “5150” psychiatric hold alarmed the facility and the woman’s son — and raises questions about the role police often play in situations that involve complex health care, experts said.
“If they had allowed the trained medical staff there to handle it, it would have been better for everybody,” said King’s son, Geoffrey King. “It’s an awful disease, but she’s in the best place she can be and they took her out of that place. They didn’t just make a bad situation worse. They created an altogether traumatic situation.”
A doctor at San Francisco General Hospital who examined Carol King wrote that staff members at the care home, AgeSong University in the Portola neighborhood, “tried to let the officers know there was no need for concern, no injuries to either resident, however police placed patient (on a hold) due to concern for increased risk of further violence.”
Police officials defended the way the officers handled the July 26 call. Officer Grace Gatpandan, a department spokeswoman, said, “In this case, it appears that the person did demonstrate that they were a danger to others.”
King’s son and some disability advocates, though, said the episode was akin to police interference in a schoolyard squabble. The son, Geoffrey King, a constitutional lawyer who lectures at UC Berkeley and advocates for press freedom, said the officers escalated a situation that was under control, and he questioned the training officers receive in enforcing holds and interacting with people with dementia.
Under state law, a person can be hospitalized involuntarily if deemed dangerous to herself or others. San Francisco General, the city’s psychiatric facility, sees about 6,100 patients brought in on such holds every year, a third of them homeless. Experts said enforcing a hold against an Alzheimer’s patient at a care home was highly unusual, though statistics were not immediately available.
...Susan Mizner, who is in charge of disability rights for the American Civil Liberties Union, said the officers should have deferred to the health professionals at the care home.
…The Police Department’s policy on psychiatric evaluation states, “If the person is currently not demonstrating a public safety risk, do not transport.” Geoffrey King argued that the officers violated that policy.
…Mizner said the incident raises questions about the training officers undergo for encountering dementia patients. Brie Williams, a doctor at UCSF who helps run such training for the Police Department, said San Francisco is ahead of many other jurisdictions in that it includes dementia behavior under the umbrella of crisis-intervention-team training.
But she shared Mizner’s concern about the incident, saying it underscores the need for another first-response option beyond police.
“We are putting police officers in a very difficult and sometimes impossible position where they are not health care providers,” Williams said. “They need an added layer that brings the health care approach to homes and communities.”
http://www.sfchronicle.com/bayarea/article/Questions-raised-after-woman-with-Alzheimer-s-9135220.php
Alzheimer's Association Appreciates Gene Wilder's Family Sharing His Diagnosis
ReplyDelete8:56 AM PDT 8/30/2016 by Lorena O'Neil
"Certainly anytime somebody shares their diagnosis, it heightens awareness of the disease, which we hope leads to early detection."
The Alzheimer's Association is grateful to Gene Wilder's family for revealing he battled Alzheimer's in the final three years of his life.
Monica Moreno, director of early stage initiatives for the Alzheimer's Association, spoke with The Hollywood Reporter about how raising awareness about the disease could lead to early detection.
"Certainly anytime somebody shares their diagnosis, it heightens awareness of the disease, which we hope leads to early detection of the disease," Moreno said.
She said so much of the general public believes that the symptoms of Alzheimer's are a normal part of aging that they don't go to the doctor or discuss the challenges they are facing. From Wilder's family statement, Moreno said, it appears that Wilder did get an early diagnosis. "He was able to actually have conversations with his family about what he wanted to have happen" in terms of sharing the diagnosis, she said.
"The choice to keep this private was his choice, in talking with us and making a decision as a family," said Wilder's nephew, Jordan Walker-Pearlman, in a statement announcing the actor's death.
Moreno explains that because of the misperceptions around Alzheimer's and the belief that symptoms are a part of aging, many Alzheimer's patients unfortunately never get to have that conversation with their family, particularly because the disease is a progressive one.
Wilder and his family chose to keep his diagnosis a secret and explained their decision after he passed. “The decision to wait until this time to disclose his condition wasn’t vanity, but more so that the countless young children that would smile or call out to him ‘there’s Willy Wonka’ would not have to be then exposed to an adult referencing illness or trouble and causing delight to travel to worry, disappointment or confusion," said Walker-Pearlman. "He simply couldn’t bear the idea of one less smile in the world."
"It's a very personal decision for each individual and their family," said Moreno. She said Walker-Pearlman's statement shows Wilder was "very thoughtful in why he made that decision."
"We appreciate the fact that the Wilder family did share his diagnosis after his passing," said Moreno. "We know that over 5 million Americans are living with this disease and over 15 million people are caring for them." She said that the Alzheimer's Association wants people to "know they are not alone" and that it can provide information on care and services for patients.
Wilder's family referred to the disease as an "illness-pirate."
"We understand for all the emotional and physical challenges this situation presented we have been among the lucky ones – this illness-pirate, unlike in so many cases, never stole his ability to recognize those that were closest to him, nor took command of his central-gentle-life affirming core personality," said Walker-Pearlman. "It took enough, but not that.”
http://www.hollywoodreporter.com/news/alzheimers-association-gene-wilder-diagnosis-924223
Their brains had the telltale signs of Alzheimer’s. So why did they still have nimble minds?
ReplyDeleteBy SHARON BEGLEY
NOVEMBER 14, 2016
The defective proteins that are widely thought to kill brain neurons and cause, or at least indicate, Alzheimer’s disease do not always have that calamitous result, scientists reported on Monday, raising more doubts about conventional approaches to diagnosing and finding treatments for Alzheimer’s.
The researchers analyzed the brains of eight people who died in their 90s and who had excellent recall until then. Three of the eight brains had the defining amyloid plaques and tau tangles of Alzheimer’s, yet somehow were “immune to [their] effects,” said neurologist Changiz Geula, of Northwestern University Feinberg School of Medicine, who led the study and presented the results at the annual meeting of the Society for Neuroscience in San Diego. “What’s significant about these findings is that they show there can be high densities of plaques and tangles in the brains of some elderly individuals who are cognitively normal or even superior.”
Although the study was small and preliminary, outside scientists were impressed…“
Previous studies have shown that some people with numerous amyloid plaques did not have Alzheimer’s or other signs of cognitive pathology before they died, but “these findings are clearer than prior ones because the patients are older,” said George Perry, dean of the College of Sciences at the University of Texas, San Antonio. That is, by 90-something, amyloid plaques and tau tangles should have wreaked their terrible havoc.
The findings raise the obvious question of why some people are immune to molecules widely thought to be lethal to brain neurons and synapses. Geula and his colleagues plan to look for genetic, dietary, and environmental factors that might protect against both amyloid plaques, the sticky blobs that form between neurons, and tau tangles, twisted strands of a protein that build up within neurons.
Inside a healthy brain, proteins called beta amyloids are destroyed; in the brains of people with Alzheimer's disease, they are not and accumulate to form sticky plaques.
Two main explanations for “Alzheimer’s brains” that don’t develop Alzheimer’s are emerging.
One, known as cognitive reserve, holds that if people are well-educated and intellectually engaged throughout life, they won’t show the memory and cognitive impairments that otherwise come with the loss of synapses and death of neurons in the brain’s memory and thinking regions. Such people have enough backup neurons and redundant synapses to withstand some losses, much as an external hard drive lets a computer withstand the loss of, say, the Word files in a computer’s internal memory.
“What you do in your life somehow protects against these otherwise toxic molecules, allowing you to lose cells and synapses and still function,” said Hartley.
The other possibility is even more intriguing. Perhaps biochemical or genetic mechanisms prevent cognitive decline even when the brain is riddled with pathological amyloid and tau…in the meantime the finding that an amyloid-ridden brain is not necessarily a brain with Alzheimer’s underlines a longstanding concern about the brain scans sometimes used to diagnose Alzheimer’s.
…even before this study, research as far back as 1991 showed that “many people have amyloid plaques in the brain but have no symptoms of cognitive decline or Alzheimer’s disease,” according to the Alzheimer’s Association.
Scans can therefore “give false positives,” said Perry, a longtime skeptic of the idea that amyloid plaques are the chief cause of Alzheimer’s. “The value of the tests as a public health measure is questionable,” he said, and the Alzheimer’s Association does not recommend their routine use to diagnose the disease.
https://www.statnews.com/2016/11/14/alzheimers-brain-amyloid-plaque/
Glen Campbell’s Wife and Daughter Discuss His Final Album, ‘Adios’
ReplyDeleteBy Chuck Armstrong July 14, 2017
As Glen Campbell continues to live a life affected by Alzheimer’s disease, he is surrounded with a loving community that is making sure his music and legacy continue to reach new and old fans alike all over the globe. More than five decades after Campbell released his first studio album, that community is spreading the good news of his 64th and final record, Adios…
In the liner notes of the new album, you said this just had to be done. Was that feeling universal amongst the people working on Adios?
Kim: Absolutely everyone felt this had to be done. The doctors told us that keeping him engaged musically is the best and healthiest thing for him. Glen loved it. If you saw the videos of him in the studio doing it, you can tell he savored every minute of it. It was just a big love fest…
Ashley: …He has no idea that he has an album out. He had no idea when he won a Grammy…
Kim: But he listens to music, nonetheless. So we always play it for him.
With music being such an integral part of Glen’s life — and now, it’s such an integral part of his health — do you find a sense of closure with the release of Adios?
Kim: I wouldn’t say closure, but I would definitely say “accomplishment.” I think there is a lot of satisfaction with this, especially having done the film [Glen Campbell: I’ll Be Me] and then this. Glen contributed to society with his music, and now he’s raising awareness of Alzheimer’s…I hope that by going in and doing this album while he had Alzheimer’s, it serves as encouragement to other people with Alzheimer’s that you still have a full life left to live. Get the help you need, have fun, laugh, and enjoy it…
Kim: I let people know, yes he’s in the late stages, but those stages can go on and on and on. Not much has changed. He’s healthy except for Alzheimer’s. He’s content, he’s cheerful. He doesn’t communicate with language, he doesn’t understand what you say, though.
Kim, a big part of what you do is not just promoting Glen’s music, but also raising awareness of Alzheimer’s.
Kim: The documentary helped a lot of people because it helped remove the stigma of getting the diagnosis. It educated a lot of people, and it brought this discussion to the forefront — we opened up a national conversation about it. Glen did so much with this film. I want to continue what he started.…My heart goes out to caregivers who are stressed out and not getting any sleep. That affects your own health. Studies show that caregivers could lose 10 years of their life, and they’re at greater risk of developing dementia because of the stress. So I joined a memory care group, and …created a support group.The biggest thing I was facing was depression. You always carry this sadness with you. How do you overcome this?...So, I started CareLiving.org…to encourage caregivers and to inspire them. …hope this site will start making real-world changes for caregivers by showcasing the best memory care communities in the country…improve the quality of life for people with dementia, maybe donating gardens or art rooms…When my loved one is cared for well, it gives me peace of mind. I want to help other families have that peace of mind.
Do you find it difficult to go around the country talking about Glen’s illness? When you’re promoting Adios, there really is no way not to talk about it …
Kim: It’s an opportunity to help people know they’re not alone. I think it’s something like every 16 seconds, someone else is diagnosed … there are constantly people coming in behind us at the beginning of their journeys. We want to provide hope and inspiration and encouragement. And, honestly, it’s therapeutic for me.… Glen opened every show with, “Hi, I’m Glen Campbell, and I’m happy to be here tonight. Heck, at my age, I’m happy to be anywhere!” That’s the way he is today. He’s just happy, and as I sit around being depressed and sad, Glen is happy! I should be happy for that, and so I try to count my blessings,…
http://theboot.com/glen-campbell-family-adios-interview/
Glen Campbell is the most underappreciated musician in America
ReplyDeleteMatthew Walther
July 18, 2017
It's been nice to see that with the release of Adiós, his new — and almost certainly final — album, Glen Campbell is finally getting his dues from critics…
The man from Billstown, Arkansas, has had enough careers for five great musicians. Campbell was a brilliant session guitarist and since the early '60s has been pop's most versatile interpreter not named Barbra Streisand. He was country's best ballad man in his heyday and had an unfailing instinct for spotting songwriting talent. This is a man who introduced Donovan to American audiences and discovered Alan Jackson. He could slay in a duet with Johnny Cash, but he was also the crown prince of easy listening.
The best place to start for people who think of Campbell as "That guy who did 'Wichita Lineman'" is the brilliant two-disc collection The Capitol Years, whose compilers had the good sense to look past the chart toppers, brilliant as most of them were. "The Universal Soldier" is the best anti-war ballad ever sung by a guy whose politics basically consist of the sentiment that draft dodgers should be hanged. "Less of Me," from his album of duets with Bobby Gentry, will make Byrds fans and Merle devotees alike salivate. Sorry, Nilsson fans (of whom I am certainly one): "Marie" is easily the best cover of a Randy Newman song ever. Then there the ones people do tend to know: "Gentle on My Mind," "By the Time I Get to Phoenix," "Galveston," which belongs on any short list for best pop single of all time, and various cuts from Rhinestone Cowboy, the greatest country record released in the '70s and a fine rebuke to hipster cultists who imagine that outlaw posturing was the genre's be-all end-all.
If the album had been compiled a few years later, it might have been expanded to a third disc. Unlike virtually every single one of his contemporaries, Campbell managed to recover from a slump in the '80s and make a huge amount of relevant and interesting music in the last two decades. No compilation of his best work could be complete without his staggering take on Jackson Browne's "These Days," which makes Nico's version sound like tin-eared elevator music. …"I'm Not Gonna Miss You" is my early pick for song of the decade.
But the most salient fact about Campbell and his career is that he was always very consciously making music for adults. If there is anything that could do with a revival in 2017, it's well-crafted, lushly produced records of men and women singing recognizable songs accompanied by traditional instruments. I don't know who Ed Sheeran is, but I get the sense that most of his recorded output is not exactly at the "Dreams of the Everyday Housewife" level of relevance for people who, whatever their real age, are not emotional teenagers. Campbell's songs are about loneliness, melancholy, spouses, children, and God, real things that people come to grips with when they're old enough to have been really hurt. He sings about love not as some kind of intoxicating Platonic ideal but as something hard and difficult that we could all use a little more of in a fallen world full of misery.
Adios is a case in point. Who would have thought it was possible to do anything interesting with "Everybody's Talkin'" in 2017? The youthful ennui so familiar from Harry Nilsson's classic recording is entirely absent here, replaced by a fragile, haunting ballad about what it's like to lose your mind. According to his wife, Kim, Adios was recorded as Campbell was descending into the final stages of Alzheimer's. As of this writing, he has no idea that the album even exists. Which is all the more reason to celebrate his extraordinary achievement.
http://theweek.com/articles/712423/glen-campbell-most-underappreciated-musician-america
Glen Campbell's doctor: Music star was 'striking example' of Alzheimer's quirks
ReplyDeleteAugust 9, 2017
A. Pawlowski
As Glen Campbell transformed from a country music legend to an Alzheimer’s patient, Dr. Ronald Petersen was by his side.
Petersen, director of the Mayo Clinic Alzheimer's Disease Research Center, was the late entertainer’s physician. He saw first-hand how music and personality affected the course of the disease in Campbell, robbing him of the ability to remember lyrics, but not guitar solos or social graces.
The musician and his family were extraordinarily open about his diagnosis in 2011, going on a goodbye tour and starring in the documentary, "Glen Campbell: I'll Be Me," released in 2014.
With 5.5 million Americans living with Alzheimer’s, Campbell's journey was painfully familiar to many families. Petersen talked with TODAY about his famous patient’s experience and legacy.
What do you think about Glen Campbell’s decision to be so open about his diagnosis?
Petersen: The impact on Alzheimer’s awareness was tremendous. It let the general public know anybody can get this disease, regardless of their background, intelligence, or occupation. It really cuts across all sectors.
Glen not only came out and said, “This is what I’ve been diagnosed with,” but he and his family said, “We’re willing to have a documentary made to characterize how we deal with this.” That is unique.
It’s comforting for other families who are dealing with this to know they’re not alone…
Campbell didn’t forget how to play guitar — what do you make of that?
Petersen: He needed a teleprompter to help him with the lyrics that he’d been singing for four or five decades. Yet, you give him a cue — it might say on the teleprompter, “Glen, play a long guitar solo here” — and he does a perfect guitar solo for five minutes.
He was a striking example of the dissociation between some memory and verbal skills, and then motor skills that go along with playing a guitar and remembering the music. It does show that different regions of the brain are affected differently by the disease process.
What that tells us is maybe we shouldn’t dwell on what we cannot do because of the disease, but focus on what we still can do. One interpretation of the documentary is exactly that. Here is a person who really was moderately affected by the disease, yet he continued doing what he loved to do, he was surrounded by his family and friends and maintained a pretty high quality of life well into the disease.
How does music affect Alzheimer’s patients in general?
Petersen: Music stored in the brain from a bygone era can actually stimulate some memories and some motor functions…
Music therapy can have a calming effect, reducing the need for medications…
Campbell struggled with alcohol and drug abuse. Could that have caused Alzheimer’s?
Petersen: … severe alcohol use and certain drug behaviors can compromise the brain’s resilience. If we’ve had certain insults over our life — be it alcohol, drugs or head injuries — that may reduce the ability of the brain to compensate for the development of either aging or Alzheimer’s-type pathology…
Campbell seems to have stayed sweet and upbeat. Do people’s personalities stay the same after a diagnosis?
Petersen: In general, I think most people remain consistent with their previous personality characteristics.
If a person was a nice individual throughout his or her life, that probably will continue and that certainly was exactly the case with Glen.
On the other hand, there are instances where people do undergo a change. The plaques and tangles that cause the disease may be distributed in the brain in different regions in different people. If you get more of the frontal lobes involved, which to a certain extent dictate our behavior, personality, social appropriateness, you may get these behavioral personality changes. It’s variable…
https://www.today.com/health/glen-campbell-s-doctor-explains-alzheimer-s-effect-musician-t114895
Glen Campbell's wife to other Alzheimer's caregivers: You are not alone
ReplyDeleteJessica Bliss, The Tennessean
Aug. 8, 2017
This story was originally published on March 19, 2017. Glen Campbell died on Aug. 8, 2017.
NASHVILLE —
Doctors in 2011 diagnosed Glen Campbell — the country music legend who has sold more than 50 million albums with hits such as Wichita Lineman, Galveston and his signature Rhinestone Cowboy. As the disease has progressed, Kim, his wife of 34 years, has been by his side.
There's a song on Glen's album Ghost on the Canvas. It begins with the words: "I know a place between life and death for you and me."
"That's kind of where you feel like you are living when you are living with Alzheimer's," Kim says.
The signs appeared as early as 2009. Occasional memory lapses. Mild cognitive impairment, doctors said.
Sometimes it turns into Alzheimer’s, and sometimes it doesn’t: “So just bring him back every year, and let’s keep a watch on it and see what happens."
At the time, Glen, was touring and Kim was in school for interior design at UCLA. They lived in Malibu, just enjoying life. But inside Kim was panicking.
Glen began repeating himself a lot, asking the same questions over and over. And he became compulsive about mundane tasks…
His forgetfulness became an impairment to conversation. And even with Glen constantly by her side, Kim began to feel a sense of loneliness because their conversation was so stale.
When he started not being able to find his way home from the golf course — a 10-minute drive he had made for years — Kim knew something was really wrong.
In 2011, the couple went back to the doctor and repeated the same memory tests from years before. That’s when doctors used “the A word."
Her first question was: “Is it fatal?” The answer was yes. Generally, people with Alzheimer’s live two to eight years after diagnosis.
“That was terrifying,” Kim says.
But with fear came another feeling.
"Once I knew that he had Alzheimer’s everything started making sense," Kim says. “And that fills you with compassion when you can understand it.
“From the time that I understood, I was there for him every single second.”
Many of those seconds, though, were draining.
Shortly after the diagnosis, Glen went on his final tour…
In the early stages of Alzheimer's, most can function fairly well and continue to do what they love. In the middle stages, they can usually live at home, although they need support and supervision. In the final stages, someone needs to be with them all the time.
…"People don’t understand that Alzheimer’s is not just about losing your short-term memory and then your long-term memory," Kim says. "But you can become paranoid, suspicious, violent.
"They just lose their ability to think or reason. They can wander off and not know where they are going or why they are motivated to leave the premises."
…More than 15 million Americans provide unpaid care, such as physical, emotional and financial support, for the estimated 5.5 million Americans living with Alzheimer’s disease, according to findings from the 2017 Alzheimer’s Disease Facts and Figures report released by the Alzheimer's Association.
…only way to help others is to speak about it openly and offer support through shared experiences and stories…
https://www.usatoday.com/story/life/nation-now/2017/08/08/glen-campbells-wife-other-alzheimers-caregivers-youre-not-alone/551086001/
Glen Campbell’s wife and caregiver says community is essential
ReplyDeleteMarch 31, 2017
By SUSAN LEATHERS
In 2011, Glen Campbell and his family told the world the multi-talented singer, actor and former TV host had Alzheimer’s disease.
… “When you are open and honest with people with what you’re going through, they just want to support you,” Kim Campbell said…
The 81-year-old entertainer’s Alzheimer’s journey has been well documented, most notably in the 2013 Academy Award-nominated documentary “Glen Campbell … I’ll Be Me.” …
… Kim Campbell has shared their very personal story through the lens of the caregiver. In early 2015, she created an online blog, careliving.org, to deal with the depression that impacts many caregivers…
“We’re all part of the same club. We all need each other,” she said. Most importantly, “You need to keep living while you’re caregiving. You need to be happy. You need to take care of yourself.”
…Just prior to the diagnosis, Glen was planning the Goodbye Tour… Kim said after learning the news, her mind filled with worries and reasons they should cancel it…
“I said, ‘Honey, what if you mess up?’
“He said, “I’ll just tell people I have Alzheimer’s.’”
And he did.
The Goodbye Tour, originally scheduled for five weeks, continued for almost two years.
… “We just had a blast out there. That’s another benefit of an early diagnosis, you’ve got that time to just surround yourself and just absorb every ounce of happiness that you can with your family. And that’s what we did.”
“But all good things must end,” she continued. At the close of 2012 it became obvious it really was time to say goodbye to the stage.
She credits the tour with slowing down the disease’s’ progression in her husband of 35 years.
“Music really did help him plateau for a lot longer than he otherwise would have,” she said.
After the tour, the disease progressed quickly from the middle to late stage.
In 2013, Glen and Kim moved from Southern California to Nashville to be closer to son Shannon and daughter Ashley who had earlier relocated to pursue music careers.
Together, and with the help of in-home caregivers, they cared for Glen. Kim told her audience she thought he would stay there the rest of his life.
But then it became too hard. Glen became combative, a common Alzheimer’s symptom. “And when he got agitated, he got really agitated, and that was really scary,” Kim admitted. It took intervention by Glen’s doctor and a Vanderbilt social worker, though, to get her to admit she and the family couldn’t care for Glen at home 24/7 any longer.
The social worker told Kim she had three options: Adult day care, temporary residential respite care or permanently moving Glen to a memory-support community.
... Ultimately, she decided to try an adult day care.
…While day care offered respite during the day, nights at home were still a challenge. Glen wore a motion detector so the family knew where he was if he wandered. He got up multiple times during the night. The caregivers took turns staying up at night to make sure he was safe.
All were getting exhausted.
…Kim decided a respite stay would be good for everyone.
…Glen’s respite stay became a permanent one.
“I always say I didn’t put my husband in a memory support community, …Instead, our family joined a memory support community…Now we have a big team taking care of Glen.”
Glen Campbell, who turns 82 on April 22, has reached the final stages of the disease. He can no longer talk or take an active role in the many “engaging and stimulating” therapies offered.
“But you know what? He just benefits from being with people,” said Kim, who describes Glen today as content and cheerful. “We’re just working to find joy in the midst of sadness and doing the best we can.”
https://franklinhomepage.com/glen-campbells-wife-and-caregiver-says-community-is-essential/
I'm not worth it but this only my tribute to keep him gentle on my mind https://www.youtube.com/watch?v=TCDti24Uras
ReplyDeleteGlen Campbell’s death shines spotlight on Alzheimer’s
ReplyDeleteAugust 18, 2017
By Gracie Bonds Staples
ATLANTA — …According to the Alzheimer’s Association, more than 5 million Americans are living with the debilitating disease, and there are more than 15.9 million caregivers of people with Alzheimer’s and other dementia in the United States.
That would certainly qualify Alzheimer’s as a household name, but you don’t hear about it all that much, and then someone like country music legend Glen Campbell dies and all of a sudden it’s in the news again.
Campbell was diagnosed in 2011. He died a week ago at age 81, having helped bring “Alzheimer’s out of the shadows and into the spotlight.” He became a public face of the disease in 2014 when he allowed a film crew to shoot his final tour for the award-winning documentary “I’ll Be Me.”
Alzheimer’s, a progressive disease of the brain, is best known for causing memory loss, but it also has can affect people’s ability to move and eat by themselves. There is no cure for the illness.
…Anyone left holding the memories will tell you there’s never been a more lonely or trying place.
McCormick knows this perhaps better than anyone. That coin flips daily and sometimes minute by minute.
“We’re all touched in some way by this disease,” she said. “Every time you turn around, there is another memory-care facility opening up. That tells me there’s a huge demand out there.”
No doubt. Every 66 seconds, according to the Alzheimer’s Association, someone in the United States gets a diagnosis.
Synergy HomeCare provides home care to people with Alzheimer’s and other types of dementia. What sets them apart, McCormick said, is the company’s certified nursing assistants go through a “virtual dementia tour” that simulates the symptoms of age-related Alzheimer’s and dementia to help them better identify and cope with their patients’ behaviors and needs.
For instance, caregivers learn not to approach a patient from the side because they get startled easily and can’t distinguish where sounds are coming from.
…Experiencing what it’s like to have the disease, she said, opens the caregivers’ eyes to how it must feel and makes them more compassionate in their responses to those suffering from the disease.
The virtual tour was developed by P.K. Beville, a geriatric psychologist and founder of the nonprofit senior citizen advocacy group Second Wind Dreams.
McCormick said …“But so many of our clients are affected by this horrific disease, and I have seen over and over the devastation that this disease brings to families that care for their loved ones affected by Alzheimer’s,” she said. “It starts with mom or dad not remembering their loved ones, being afraid and confused as to why that person is visiting them, and often escalating to the point that they no longer remember how to do things like swallow.
“I think about which you’d rather have — the physical or the cognitive impairment? For families, it’s harder for someone who has cognitive impairment because the patient has no memory of them. But for the actual patient, it’s easier to have cognitive impairment.”
In a March interview with USA Today, Campbell’s wife, Kim, remembered a line from one of her late husband’s songs: “I know a place between life and death for you and me.”…
http://www.seattletimes.com/opinion/glen-campbells-death-shines-spotlight-on-alzheimers/
For those people whose relative are suffering from Alzheimer’s Disease and maybe reading this, I find it hard that people are still ignorant of herbal medicine when it comes to treating Alzheimer’s Disease.
ReplyDeleteI have been through many phases over the last couple of years since my father's diagnosis, he was 53 years old and had Early Onset Alzheimer’s Disease and his diagnosis changed my life in many ways, I spend most of the time in denial and I keep thinking the tests were wrong. But deep down I knew they were correct. Though sharing his story is very difficult. He was always very successful in being able to accomplish anything he set his mind on doing. Alzheimer’s is a bitch of a disease. It began by robbing his recent memory, but it didn't stop there. It continues to steal, taking the most recent memories until it has pilfered all but the oldest memories, he experienced a decline in his ability to think, remember and make decisions. I feel a need to express my thoughts and feelings about how it affected his day to day living and how its deteriorated since despite the help of some wonderful medics and medicine.
I remind myself how lucky to come across Charanjit rychtova's herbal medicine which is able to control this disease without any side effect, I felt a moment of relief hoping that he is free from this ailment, and nothing compares to the healing power of nature. Now I believe almost every health problem can be addressed in one natural way or another. The only thing I wanted was for him to feel better. I’m proud to say my Dad is Alzheimer’s free. You can also contact him for advice and more info. charantova@gmail.com