The Burden of Stigma

by Ken Clasper, individual living with Lewy Body Dementia
KenClasper
Stigma is a terrible thing, but it’s not something which is new,it has been around for many years.

We have seen stigma in many illnesses,like cancer in the 1950-60s. It has also been attached to Aids, and recently Ebola, yet much of it is caused by old stories and myths, which do not seem to go away; possibly because many people simply believe they are true.

I have been asked on many occasions whether dementia us contagious, something which has left me staggered. Some think you can catch it if someone who has dementia sneezes.

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But I believe much of this stems from the fact that it sometimes seems to run in families; but most of it seems to come from the fact that some forms are called disease, like Lewy Body Dementia, which in some cases is called Lewy Body Disease; just one case in many.

Some charities sometimes call themselves “Alzheimer’s Disease” or “Dementia Disease”, and this also helps keep the stigma going. I suppose this is because professionals cannot decide what to call illnesses; or people call things by different terms and names.But I feel that much of this could be stopped if everyone was educated properly about this illness, rather than picking up odd pieces and trying to find the truth their own way

To educate everyone we should be starting with school children, who are already learning about someone in their families who has the illness. Many of these children want to learn more about what is happening to granny or grand dad, and it’s now time to start helping them understand just what is going on. These are the people who will shape the future in stopping this stigma, and therefore we must help them to help us.

Years ago parents kept their children out of the way, when someone had dementia, but now things have changed for the best, and it would be much better without the stigma. I have also heard stories of people crossing the road, so they did not come into contact with someone who had dementia in their families. This usually happened in very close communities like small villages.

So it’s time to find a way of getting into all schools, to teach all children that stigma, is not a nice thing, no matter which illness it’s attached to. Teachers should allow people with illnesses into schools to help educate those who are our future support.

The Government says that they are dementia friendly, so it’s time they factored this into education. It does not need to be an examination study, just allow us in during free time to speak to children and explain our problems and the stigma which is attached to it.

Let us hope that sometime soon things will change and change for the best. Let us all work to remove all stigma once and for all

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Her Name Is Rose

the rose
The first day of school our professor introduced himself and challenged us to get to know someone we didn’t already know. I stood up to look around when a gentle hand touched my shoulder. I turned around to find a wrinkled, little old lady beaming up at me with a smile that lit up her entire being.

She said, ‘Hi handsome. My name is Rose. I’m eighty-seven years old. Can I give you a hug?’

I laughed and enthusiastically responded, ‘Of course you may!’ and she gave me a giant squeeze.

‘Why are you in college at such a young, innocent age?’ I asked.

She jokingly replied, ‘I’m here to meet a rich husband, get married, and have a couple of kids…’

‘No seriously,’ I asked. I was curious what may have motivated her to be taking on this challenge at her age.

‘I always dreamed of having a college education and now I’m getting one!’ she told me.

After class we walked to the student union building and shared a chocolate milkshake. We became instant friends. Every day for the next three months we would leave class together and talk nonstop. I was always mesmerized listening to this ‘time machine’ as she shared her wisdom and experience with me…

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Over the course of the year, Rose became a campus icon and she easily made friends wherever she went. She loved to dress up and she reveled in the attention bestowed upon her from the other students. She was living it up.

At the end of the semester we invited Rose to speak at our football banquet. I’ll never forget what she taught us. She was introduced and stepped up to the podium. As she began to deliver her prepared speech, she dropped her three by five cards on the floor. 
Frustrated and a little embarrassed she leaned into the microphone and simply said, ‘I’m sorry I’m so jittery. I gave up beer for Lent and this whiskey is killing me! I’ll never get my speech back in order so let me just tell you what I know.’

As we laughed she cleared her throat and began, ‘ we do not stop playing because we are old; we grow old because we stop playing. There are only four secrets to staying young, being happy, and achieving success. You have to laugh and find humor every day. You’ve got to have a dream. When you lose your dreams, you die. We have so many people walking around who are dead and don’t even know it! There is a huge difference between growing older and growing up.

If you are nineteen years old and lie in bed for one full year and don’t do one productive thing, you will turn twenty years old. If I am eighty-seven years old and stay in bed for a year and never do anything I will turn eighty-eight. Anybody! Can grow older. That doesn’t take any talent or ability. The idea is to grow up by always finding opportunity in change. Have no regrets. The elderly usually don’t have regrets for what we did, but rather for things we did not do. The only people who fear death are those with regrets.’

She concluded her speech by courageously singing ‘The Rose..’ She challenged each of us to study the lyrics and live them out in our daily lives. At the year’s end Rose finished the college degree she had begun all those years ago.

One week after graduation Rose died peacefully in her sleep. Over two thousand college students attended her funeral in tribute to the wonderful woman who taught by example that it’s never too late to be all you can possibly be.

REMEMBER, GROWING OLDER IS MANDATORY. GROWING UP IS OPTIONAL. We make a Living by what we get. We make a Life by what we give.

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Living with Dementia: “We Shall Overcome…

discriminate-1024x682by: Laura Beck – developer of Eden at Home. Today, as Learning and Development Guide, she coordinates management of the Eden Alternative brand and packaging of the organization’s message in promotional and educational content. Laura also supports design of new and existing Eden Alternative curricula and educational products, coordinates and facilitates the Eden Alternative’s webinar-based education, and serves as a public speaker and an educator of designated educational offerings.

I’m always struck by ageist remarks that bundle aging and living with dementia as sort of a package deal. It came up again recently in a discussion with a friend who argued that people living with dementia were victims of ageism. Hmmmm… perhaps… if the individual in question is indeed being marginalized due to his or her age alone.

Here’s the rub. Living with dementia is about changing abilities, not necessarily growing older. You can be a younger adult and still live with dementia. It’s true that, statistically speaking, a large number of people living with dementia are older people. But to compartmentalize the experience of dementia as an aging issue alone is a very bad habit on the part of society.

To really shift this paradigm, the world of aging services must clasp hands tightly with those who support the well-being of people who live with differing abilities. This meeting of the minds is crucial when it comes to creating well-informed, respectful, and supportive communities that integrate the needs and contributions of those living with dementia.

At a recent national summit hosted by the Dementia Action Alliance, Val Halamandaris, head of the National Association of Home Care and Hospice, described living with dementia as a civil rights issue. I could not agree more. The American Disabilities Act helped wake us up to the need for universal design, accommodation, and a serious shift in public awareness. We still have a ways to go there, folks, and even further, regarding the ability of those who live with dementia to be active, contributing members of their communities.

I am inspired by the efforts of some towns and cities to become dementia-friendly communities. These initiatives include comprehensive plans to create easy-to-navigate environments and accessible travel options; respectful and responsive businesses; opportunities for community engagement; and education designed to deconstruct stigma, build awareness, and highlight contribution potential. Through their actions, communities like these are saying, “Yes, we welcome the unique gifts that individuals living with dementia have to offer us. Yes, we believe that every person is vital to creating a rich and diverse community. Yes, we see you.”

Here’s to the power of possibility. Just say, “Yes.”

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Say Hello to the Person

dancing with dementiaby: Dr. Heather Hill, facilitator/trainer in dementia care. She has worked for twenty-five years in dance therapy
As dance therapist – or “the lady with scarves” as I think the nursing caregivers regarded me – I was expected to bring in sweetness and light – and I did! But not by myself. Despite the awful environment, despite the dementia – entering a ward filled with people in various states of withdrawal and confusion was daunting– I found PEOPLE. Together we created moments that were, creative, exciting, emotional, loud, joyous, touching and sometimes fabulously funny! This was the beginning of a passion, which still burns brightly in me to this day.

My experiences in dancing with people with dementia started me on a path of questioning. How could people who had a degenerative disease, which supposedly destroyed the person, come to life in the dance sessions? Surely if I could find people among the grey ghostly inhabitants of this institution, others could too? I refused to believe you had to be a dancer to do this.

My questioning led me to the work of Tom Kitwood, pioneer of person-centered care in dementia – a true visionary, on whose work others have continued to build and build in exciting ways. His mantra: The key psychological task in dementia care is the maintenance of personhood. Kitwood suggested that personhood is constructed and maintained in relationship, and that the relationship with the caregiver is crucial to the maintenance of personhood and the fostering of wellbeing in the person with dementia.

For me this was the lightening strike. Gone was the grim determinism of the medical label; the label of “dementia” did not mean the person had “left the building”. Very importantly, it was clear that I and others working with and caring for people with dementia could indeed make a difference; and that difference was to help the person remain a person. It also reinforced my own experience in the dance sessions where seemingly “lost” people could reappear in all their vitality.

Then came more questions, how can we help people with dementia experience themselves as persons in their everyday lives, not just in the heightened moments of an arts experience? Over the years this has been accompanied by equally important questions: How can we persuade professional caregivers to move beyond the medical label and see the person. How can they be encouraged to cease to regard behavior as a symptom of disease but rather look on it as an expression of a person’s needs and wishes? How can they be persuaded that acknowledging the person as a person is not an optional extra to the real work of physical care, that person-centered care is possible, desirable and ethical? These are the questions, which continue to engage me now in my work as a dementia care trainer and facilitator.

In all these years of being with people with dementia, I have learnt so much about what it is to be a person. This is not because of any idealization of people with special needs. Absolutely not, people with dementia are as varied as everyone else in the community. Some are lovely and some are downright infuriating! The reason that I have learnt so much from people with dementia is that dementia by its very nature – as an assault on personhood – has brought me face to face with the very basics of being a person, stripped bare and uncluttered by all the things which make up our very Western, individualistic, cognitive-obsessed and materialistic lifestyle.
It has very much turned me towards relational concepts of self, that one becomes a person in relationship and continues to be a person in relationship. It has placed less emphasis on us as purely rational human beings, and highlighted the importance of feeling and emotion. It has pointed the way to not just talk of a mind/body connection (core to my work as a dance therapist), but rather of a totality. “One’s persona is in no way ‘localizable in the classical sense…it cannot be equated with any given ‘center’, ‘system’, nexus,’ etc., but only with the intricate totality of the whole organism, in its ever-changing continuously modulated, afferent-efferent relations with the world.” (Sacks,1991, footnote 116, p.239). Again, that word relationship comes up!

In taking a more and more relational perspective, I have come also to take into account the personhood of carers and families. “Person”-centered care is really about all-persons-in-relationship. It has brought to the fore for me the constant striving of human beings to make sense of their lives, to find meaning even in the darkest moments and to be happy. As someone who rejected formalized religion, I have come to experience moments with people with dementia, which I can only describe as spiritual – a sense of heightened experience, connectedness and total immersion in the moment. I have witnessed again and again the need people have for this type of experience and the power of the arts to meet this need.

I’ve learnt a lot about myself and being with another human. Persons are more than the sum of all the facts we might know about them and the person can never be reduced to file notes on the ward, descriptions of past life, interests etc. The nature of dementia requires that we connect with the person as they are in the now. The present, especially for the person with dementia, can be a second by second thing and therefore this requires a heightened attention to who the person is right now in this moment. Taking this intense and challenging journey accompanying the person with dementia has been a huge learning experience, and has challenged me to be fully human myself.

I have also come to understand that human beings are about both continuity and change – difficult as the often-extreme changes of dementia can be for both the person and for their families. How do we cope with such extremes – how can we find the continuities but also be able to work with the changes. Since Kitwood first mooted the possibility of “relative wellbeing” for people with dementia, we have moved on first to “wellbeing” and now to “flourishing” and “creativity” in dementia. People with dementia can experience positive change and growth.

Further, the person with dementia need no longer be viewed as a passive recipient of the efforts of others, but as an active partner in making sense of the changes in their lives. And now many people with dementia themselves are speaking up and asserting their personhood.

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In-Home vs. Traditional Assisted Living

By: Amanda Kaestner Having grown up with a mother who was an RN for both in-home and traditional nursing homes, she’s had an appreciation for the well-being of today’s seniors by volunteering at VA hospitals and attending veteran events in her town.

CCAL_HandsIf you’re considering a nursing home or an assisted living agency for a beloved senior, selecting one is an arduous process. Researching, locating, making unannounced visits to, and choosing the absolute best nursing home or reputable at-home service is neither simple nor easy. Although both have benefits that make them viable options, it’s critically important to do your due diligence before deciding.

Traditional Assisted Homes
The reality is – no one wants to move to a nursing home; no one dreams of it, hopes for it, or is happy about it if the time comes. Seniors want to continue growing older with dignity, respect, and an ability to make choices. Nursing homes don’t often provide the opportunity for these seemingly-simple standards of living. It’s not that the facilities don’t mean to take away a resident’s rights, self-esteem, confidence, feeling of safety, or joy – it just often happens as a result of the facilities being understaffed and/or staffed with minimum wage aides who don’t really want to be there either. If you take a moment to peruse Medicare’s long list of a resident’s rights in a nursing home (and what should be done if those rights are violated) you might wonder why it’s necessary to list all these basic-human privileges. You would hope that being talked to kindly, getting warm meals, and not being physically neglected or emotionally hurt would never be commonplace at a facility focused on caring for seniors; but, that is not always the reality. Fortunately, the movement across America has been toward a person-centered care philosophy where nursing home residents can bathe, eat, sleep, and enjoy their life in sync with their own particular life’s rhythm and not by some rigid, inflexible schedule set forth by a facility’s director.

Not every resident is the same, especially for seniors coping with mental health issues like Alzheimer’s or Dementia. Nursing conferences and culture change workshops across America are being held to teach staff how to instill the patient-centered care mission and create an environment where residents direct their own lives and make their own decisions. More specialty assisted living facilities are doing things different than what was done in the past in order to personalize the living experience for each and every resident. According to the Health Care Management Group, more of these types of full-time care facilities offer more than traditional nursing homes and are capable of servicing their residents with rehabilitation after injuries or to control their pain management, they offer speech therapy and stimulating activities to help with memory care. Activities are optional and the area on these properties is bright and spacious allowing residents to wander safely within a beautiful natural setting. More facilities are going the extra mile to ensure maximum comfort for their residents to give them more of living experience rather than feeling cared for
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In-Home Living Services
With this choice, your loved one lives in the comfort, privacy, and security of his/her (or your) family home and the professional healthcare workers and caregivers come to the home as often as you schedule the visits. Depending on the medical needs and challenges of your loved one, this option truly provides the absolute best scenario for an individual if you and your other family members are able to physically and emotionally embrace the roles of being caregivers yourselves – even alongside a 24/7 caregiver you may hire. Having the healthcare providers come to your home and making a few physical adjustments to your property may be all you need to enable your loved one to remain at home. In a 2013 Forbes article, making small changes in the living space like adding a ramp or railings, removing throw rugs, or installing shower bars may be all you need to do to “keep them [seniors] out of nursing facilities for months or even years” or ideally – indefinitely so there’s never a goodbye to a dreaded nursing home.

Finding the right facility or caregiver doesn’t have to be something to worry about or be afraid of. Accepting care should never be taken as a reflection of a person’s inner strength and with the options that are out there today, there are many dignified routes to go about assisted living whether in-home or at a facility. Remember, just because someone is living doesn’t really mean they’re alive and every human being has the right to enjoy their life at any age. So explore your options and don’t settle for anything less than what best fits the medical and overall comfort needed.

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We Are A Long Way From An Alzheimer’s Cure

expertfrom Forbes.com 23 July 2014
By: Howard Gleckman – Resident Fellow at The Urban Institute; a member of the Board of Trustees, Suburban Hospital (Bethesda, MD) and co-chair of its Medical Quality Committee; member of the Board of The Jewish Council for the Aging of Greater Washington; senior advisor to Caring from a Distance, a non-profit that provides Web-based and telephone assistance to long-distance caregivers. A veteran journalist, Mr. Gleckman was senior correspondent in the D.C. bureau of Business Week, covering health and elder care, as well as tax and budget issues, for nearly 20 years. He was a 2003 National Magazine Award finalist for a series of Business Week articles entitled The Coming Revolution in Health Care. Mr. Gleckman is the author of Caring for Our Parents

Two take-aways from the recently concluded Alzheimer’s Association International Conference in Copenhagen: First, after years of research, we still know remarkably little about what causes dementia or how to prevent or delay it. Second, the dementia establishment, including the Alzheimer’s Association and the White House’s National Plan to Address Alzheimer’s Disease, is so focused on a cure that it pays too little attention to the immediate needs of those who already have dementia and those caring for them.

The conference was filled with academic papers based on small, preliminary studies. Researchers are testing every possible variable in older people’s lives to determine if it could be the key to dementia. And the results were all over the place.

The trick is to ignore the breathless accounts of this research that appeared in the popular media. There is no silver bullet. In fact, the conference made clear that we don’t even quite know what we are shooting at.

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One paper found that mental activity could slow the onset of Alzheimer’s. Another concluded that moderate physical activity in middle age might help. Yet another reported that people over 90 with high blood pressure were less likely to suffer from dementia (older research found that hypertension might be a positive indicator). Another suggested that widowhood in old age might slow cognitive decline (I’m not even going there).

Note that all of these suggest environmental or behavioral responses. They largely ignore the complex genetic questions raised by dementia. Are some of us doomed by our genes to suffer from dementia? The best answer is, once again: maybe.

Importantly, three new studies showed that dementia rates may be slowing in the developed world. This research confirms some important earlier work that reached the same conclusion. The reasons for this are much less clear. It may be about better cardiovascular health or perhaps even better education. Researchers are also focusing on earlier detection. A raft of experimental drugs aimed at slowing the progression of dementia have turned into costly, high-profile flops. By now, most have been abandoned.

But the latest theory making the rounds is that perhaps they were administered too late. If only we could identify likely candidates for dementia even before they begin showing symptoms, these drugs—or others—might be more effective.

One reason for all this uncertainty is that dementia is actually many diseases. While Alzheimer’s has the highest profile, others are related to Parkinson’s Disease, stroke and other vascular diseases, and the like. Many diseases will likely require many different treatments.
But meanwhile, in the U.S. alone 5 million people already suffer from cognitive impairment and 10 million family members are struggling to care for them. At this conference, which brought together researchers from around the world, there was barely a mention of caregiving issues. It was mostly about big bucks medical research.

Nothing wrong with that research, though there is so much money to be made it seems the drug companies ought to be financing it themselves, and without taxpayer help.

In the meantime, let’s acknowledge the painful reality: We are making only slow, incremental progress in the war against Alzheimer’s and other dementias. We are far from prevention or cure. For now, we should increase our focus on living with dementia and caring for those with this condition.

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Kate Swaffer – Dementia, My Story

Not all Dementias are due to Alzheimer’s, nor do they reveal themselves in the same way. CLICK ON THE TEXT BELOW TO VIEW KATE’S VIDEO BLOG.

Kate Swaffer My name is Kate Swaffer, and I live in South Australia, Australia. This is my true story about being diagnosed with a younger onset dementia, probably Semantic Dementia. It is a hideous disease that is terminal, debilitating and challenging to live with.

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Alzheimer’s Stole My Father’s Speech – Our Dog Brought It Back

Lisa-AbeytaAPPCityLife-160x152by Lisa Abeyta: Founder, CEO APPCityLife Inc.

Yesterday afternoon, I had the privilege of spending a little bit of time with my dad, who is in the advanced stages of Alzheimer’s.

My parents have two dogs in their home, one of whom, Molly, is my father’s constant companion. More than once, I’ve watched him coo and talk to Molly even as his ability to form sentences and find the words he needs to communicate has deteriorated.

When my father and I arrived at my home yesterday to give my mom an hour to run some errands, our own family dog, Roscoe, greeted him at the door. For the next hour, my father petted and talked to Roscoe. Not wanting to lose the memory of the moment, I filmed a few moments of his interaction with our dog, amazed at the clarity of my father’s words.

Alzheimer's_Dog

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