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
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 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.

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.


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Lonely Cowboy

Martin BayneBy Martin Bayne:Martin has been an assisted living resident for more than 10 years, and credits many of his ideas to his experiences as a Zen Buddhist monk and an MIT scholar. His website is; his literary journal—showcasing authors ages 60 and older—can be found at

I now share a table in our dining room with a 99-year old woman we’ll call “M”.
When I met M for the first time – yesterday evening at dinner – I cried uncontrollably for a good half-hour. In retrospect, I realize that my tears were the first shed since my mother died last month. The last four weeks I’ve been wondering when the grief would finally hit . . . and yesterday was that day.

I suspect it’s also because M has an uncanny resemblance to my mom: sunken cheeks, translucent skin, and the other myriad realities of old age – making her even more precious.

Today at dinner, I found myself again in tears – only the second time in 4 years I can remember shedding tears in the dining room. This time the sluice gates opened when M mentioned her dog, Cowboy, and how desperately she missed him, “He’s slept with me every night for eight years,” she said. I asked her to describe the dog and I then realized the dog is now being watched over by a member of the staff, here at my facility. In fact, I remember seeing the dog just yesterday – brought in by the very same staff member – who it turns out is M’s granddaughter! [I promised M I would look into it tomorrow].

But M said something else today that triggered a small epiphany. You see, “ambient despair,” a term I coined to describe the phenomenon in which residents constantly subjected to abnormally high rates of dementia, death, depression and disability, “fail” quicker than their counterparts who receive the majority of their care in the community and at home.

Yet I’ve always felt that something was missing from the equation. And tonight, as I bit into a crab cake, and M finished talking about Cowboy, she said, “The trouble with being this old is that everyone tells you what to do . . .as if you were a child.” That’s when the lights came on. The inconsistent, manipulative policies of both staff and administration in any top-down management system eventually trickle down to the residents.

Here’s an example: my facility has the ability to pump FM radio throughout the building, and every day they anesthetize the residents with the same, dreary, monotonous “golden oldies” station. All of which begs the question, “Did anyone ever ask the residents what they want to listen to?” (There’s a great little NPR affiliate station in Bethlehem, PA – just a stone’s throw from where I live.)
So, every day, at an arbitrary time slot – whether I’m talking to a friend, writing an essay or reading a magazine on the john, I can be absolutely certain I’ll hear those immortal words:

If you wanna’ be happy
For the rest of your life,
Never make a pretty woman your wife,

So from my personal point of view,

Get an ugly girl to marry you.
A pretty woman makes her husband look small

And very often causes his downfall.

As soon as he marries her

Then she starts to do

The things that will break his heart.

But if you make an ugly woman your wife,

You’ll be happy for the rest of your life,

An ugly woman cooks her meals on time,

She’ll always give you peace of mind.
Don’t let your friends say

You have no taste,

Go ahead and marry anyway,

Though her face is ugly,

Her eyes don’t match,

Take it from me she’s a better catch.
Say man, 

Hey baby.

Saw your wife the other day.


Yeah, she’s ugly.

Yeah, she’s ugly but she sure can cook.


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Dementia – The Last Childhood

By: Victoria Orlando – Teacher, Artist, Care Partner, Volunteer and Person-centered Soul

Four faces of lifeI was thinking yesterday, just before listening to a USC webinar about their gerontology program, how the course of Alzheimer’s and other dementias can include as many years as childhood. Few parents would allow their children to live those years in a physical-medical model, depriving them of the psychological, emotional, social and spiritual dimensions of care, yet our culture tacitly endorses this for our elders. I was going to ask the staff from USC if they had begun developing a program for person-centered and creative dementia care, but the emphasis was on how they were developing technologies for elders, with technology being perhaps, a nice link between the old and the young. Respecting their approach, and realizing the program I am hoping to see will not be available next semester at USC, I continue to ask myself, how can we get mainstream education involved in providing compassionate awareness and career options for holistic dementia care?

As care partners, we can find courses from the University of Bradford, or sensitive training from David Sheard’s Dementia Care Matters in the UK, learn from Hogeway, the Eden Alternative, Planetree, MoMA, and many other programs that have led the way person-centered care, and follow the art, music, horticulture and movement therapists who have used their skills brilliantly to create new ways of creating expression for people living with dementia.  But, I will not give up thinking how wonderful it would be if a higher learning institution would welcome a full program – not just courses – that specifically addresses dementia care and its many components, emphasizing, in addition to the science explaining any of the illnesses, the emotional, spiritual, social, expressive programs to support it, starting from home-care through residential settings. Cancer used to be such a frightening disease; some people would not even use the whole word, yet now attitudes have changed. Alzheimer’s and similar illnesses need more light, more exposure so they are not so feared.  Once fear lifts, understanding and care expands. We might not have cures but we do have models of acceptance and profound compassion and healing inspiration and comfort.

Today, I discovered for the first time that the world-known Mind and Life Institute in Massachusetts dedicated “to building a scientific understanding to reduce suffering and promote well-being” – offers research workshops and up to $6,000 in funding to advance work on a particular project or idea.  Creating a holistic curriculum for compassionate and comprehensive dementia care in many settings could fit their initiatives.  To build such a program and to have a university or college that truly seeks to include and promote this program to lead the way would be fantastic – and beyond me!  The authors of the wonderful white paper you sent me have such a depth of expertise and skills for more of what’s needed to do this. Do you know if creating a full course of study is something the experts are thinking about? (How to get a well-developed program reflecting the CCAL white paper, “The Quality Chasm”, into a school, I don’t know, but out of curiosity, I’ve written a friend and former dean from Rutgers to see how a school creates programs.)

They say, it is important to be nourished by your passion because even if others seem uninterested, a dream has its own life and will give you its energy for your next step.  I have no titles or noted expertise in field of dementia, but I can see more in people than many, and it moves me along, just as it moves you and so many others who share this dedication.  To offer students the opportunity to develop, create and help deliver holistic programs for people living with dementia as a meaningful career path would be so valuable in generating a life-giving culture change around such illnesses. Given the anticipated number of people diagnosed with dementia ahead of us, my hope is that we will be ready for it; with programs equal to the people they serve.

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