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.

Person-Centered Care in Urgent Care?

PennyCook2013smallBy: Penny Cook, Executive Director Colorado Culture Change

It’s rare for me to write a personal article for our newsletter but I want to share a recent experience I had with our health care system. A few weeks ago I started out my morning like many others by going for a run. Before I even took the first bounding step, I twisted my foot (I was looking up at the full moon and was taught once again that I can’t always do two things at once). Luckily I didn’t fall or one of you might have put an alarm on me. Not thinking anything of it, I continued on that run and only hours later did I realize my stupidity as my foot swelled and I became unable to bear weight on it. Normally I try not to access our health care system for myself because of my cynicism and stubbornness but when I couldn’t even walk, it was time. My son drove me to the nearest Urgent Care Center and even as I hobbled in I was dreading it. I thought the wait would be forever, I would just be a number, the doctor wouldn’t really care about me, etc. You know what? It ended up being the two most fun hours of my day. Really! Here’s why.

The first thing they did after asking my name is told me how long I would most likely be there. How respectful of them. Next they asked me if I prefer Penny or Miss Cook. Rarely do I get to make that choice. They even gave me the option of using a wheelchair or not. Not wanting to lose my independence there, I said no. After completing the required paperwork I sat down to wait. But then another pleasant surprise when someone came out to the waiting room and passed around a basket with a variety of snacks. And they left it there so we all had access to food at any time.

I was sure this couldn’t last when I was shown to a typical, sterile examination room but when the nurse came in and asked if she could take my blood pressure and pulse before she even got out the cuff, I knew these people were my kind of folk. It only got better from there. The doctor spent time with me and didn’t even laugh when I told him what I’d done. The x-ray technician asked what I did for a living and when I told him, we bonded over the fact that his first job in high school was in a nursing home. He told me how it totally changed what he thought of nursing homes because people were living vibrantly in small households with lots of choices. Hmm…that’s a little ironic. Come to find out he’s from my old stomping ground in Rochester, New York and worked at the iconic, Fairport Baptist Home, one of the pioneer homes of culture change.

As I got fitted just right for my crutches, I thanked everyone who I met that day. I told them what a pleasure it was to be treated as a person by people who obviously liked to do what they do and work where they work.

My son could only laugh as I gingerly navigated the sidewalk on crutches with a huge smile upon my face. We are changing this institutional world of health care, one small step at a time. If you have your own story about person-centered care, please share it with.

Music and Memory

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Dan Cohen, MSW, is the founding Executive Director of Music & Memory. He combines an extensive background in high tech training, corporate sales and software applications with social work, specializing in vocational rehabilitation and community service organizing. A former Consultant/Trainer for the U.S. Department of Education, he helped colleges, universities and communities nationwide to apply best practices in community service learning programs.

No one wants to end up alone and isolated in a nursing home. It’s hard enough to lose someone you love to Alzheimer’s or other forms of dementia. It’s terrifying to think you could end up there yourself, someday.

But there’s reason to hope for a better life as we age. At Music & Memory, we help elders in care facilities suffering from a wide range of cognitive and physical challenges find renewed meaning and connection in their lives through the gift of personalized music.

Beloved Music Can Renew Lives Lost to Dementia. Our approach is simple, elegant and effective: We train elder care professionals how to set up personalized music playlists, delivered on iPods and other digital devices, for those in their care. These musical favorites tap deep memories not lost to dementia and can bring residents and clients back to life, enabling them to feel like themselves again, to converse, socialize and stay present.

Music & Memory’s work is rooted in extensive neuroscience research. The results can be nothing short of miraculous.

CLICK HERE to meet Henry, who suffered from dementia for a decade and barely said a word to anyone—until Music & Memory set up an iPod program at his nursing home:

The Therapeutic Benefits of Personalized Music

Henry’s remarkable re-awakening is not unique. In more than 140 Certified Music & Memory Care Facilities throughout the U.S. and Canada, we’ve helped thousands of residents struggling from dementia and other chronic cognitive and physical impairments reconnect with family, friends and caregivers through our personalized digital music program.

Our ongoing research and evaluation of Music & Memory’s work in elder care facilities shows consistent results:
Residents are happier and more social.
Relationships among staff, residents and family deepen.
Everyone benefits from a calmer, more supportive social environment.
Staff regain valuable time previously lost to behavior management issues.

There is growing evidence that a personalized music program gives professionals one more tool in their effort to reduce reliance on anti-psychotic medications.

How Person-Centered Living Can Improve Quality of Life

Caring.Com interview with Jackie Pinkowitz, Board Chair, CCAL

CCAL Logo

Choice. Privacy. Dignity. Respect. Independence. Autonomy. These are all words that describe what people want to have as they receive care, be it medical treatment, support, or services. They are also words that unfortunately describe what many people are not given when receiving care from healthcare, support, and service providers. Jackie Pinkowitz is the board chair for the Consumer Consortium Advancing Person-Centered Living (CCAL).

Tell us about CCAL.

Jackie Pinkowitz, board chair: CCAL is a national nonprofit consumer advocacy and education organization whose mission is to raise awareness about and advocate for the widespread implementation of person-centered care and living principles, policies, and practices in home and community-based supports and services (HCBS) for elders and individuals with disabilities living at home and in assisted living.

Karen Love, current board treasurer, founded CCAL in 1995 as the only national assisted living consumer organization. In 2010, our board of directors voted to expand our mission so that we could focus on advancing policies, practices, and research to support person-centered living.

What does “Person-Centered Living” mean, exactly?

JP: Regardless of who the individual is or where they live, CCAL advocates for the following Principles of Person-Centered (PC) Living:

  • Every elder and individual with a disability is provided choice, privacy, dignity, respect, independence, and autonomy.
  • Elders and individuals with disabilities have the right to determine their HCBS needs, decide how best to have those needs met, and to be provided a means to give feedback about the quality and nature of the services and supports.
  • A person-centered culture is nurturing, empowering, and respectful, and optimizes the well-being of not only the elder and individual with a disability but also the family and larger caregiving and/or services and support network.

Currently, how much influence does this person in need of care have when it comes to making decisions about the health and care services and standards that are provided to them?

JP: To put your question about influence into perspective, we have to acknowledge that many people feel overwhelmed trying to navigate our health and long-term care system because it is so fragmented. Much is being done to better integrate care across the different settings and healthcare professionals each individual uses in their community. Many local collaboratives are bringing together a variety of stakeholders at the community level to improve care transitions and reduce unnecessary rehospitalizations. But integration is in its early stages and will require time to develop and take hold across our country.

Indeed, how much influence each person has over their care is very much related to the degree of person-centeredness their hospital or physician’s practice or residential facility has adopted as part of its commitment to quality outcomes and excellence in patient-family experiences.

The greatest challenge for each person is to truly become a partner and decision maker with their doctors and care teams across the entire spectrum of healthcare services (i.e., for primary, acute, and post-acute care) and long-term supports and services (i.e., home health, residential care, skilled nursing care) they use.

That requires each person to be well informed about their health conditions; to ask lots of questions so that they understand the procedures and medications that each doctor or healthcare professional is recommending; and then consider what their own preferences, goals, and needs are in light of all the information.

Many individuals are fortunate to have a family member or friend assist them in their decision-making process. Others often turn to a professional geriatric care manager for assistance.

What are the aspects of senior care that are most glaring in terms of how they are not meeting the needs, interests, and preferences of the person in need of care?

JP: Just to provide some background on what is glaringly missing, the 2001 Institute of Medicine’s (IOM) report titled “Crossing the Quality Chasm” called for a redesign of the nation’s healthcare system and described healthcare in America as impersonal and fragmented. This report stated that a critical element needed in the redesign was a shift to a person-centered approach, moving away from the traditional clinician-/disease-centered approach.

So, many years later, the traditional approach to healthcare still focuses almost exclusively on the physical condition of a person. Health and well-being, however, are contingent upon more than the physical condition; it also includes the psychosocial-spiritual dimensions of the individual.

All dimensions of health and well-being must be accounted for when considering how to deliver quality care. Increasingly, research shows that “how” care is delivered can be critically important to overall success — as important in many ways as “what” care is provided.

We know that most providers intend to deliver the best services possible. To that end, they hire and train staff to implement services skillfully, efficiently, and effectively. But person‐centeredness requires so much more. It is all about relationships! Staff need to appreciate the uniqueness of those they interact with — and they need to show caring connections to them as they deliver services. As administrators, professionals, and staff achieve ongoing connectedness with the people they serve and with one another, the organization begins to demonstrate the essence of person-centered care and living by meeting the interests, preferences, and needs of those they serve.

What does it mean to be an informed eldercare consumer?

JP: Being an informed eldercare consumer means CCAL wants people to gather meaningful, reliable information and resources so that they and their loved ones will be prepared to make meaningful, reasonable, and realistic decisions about their health and long-term care needs, wants, and preferences as they encounter them.

The Internet is providing people with numerous connections to information, some of which is based on research and best practices, some on real-life personal experiences, etc. Consider the source of the information and reach out to national organizations like ours for additional resources.

CCAL encourages families to ask their providers many questions, take time to review your options, and make a thoughtful decision before you act.

In what ways are people harming themselves or their loves ones by not being an informed eldercare consumer?

JP: The most difficult issues for families to deal with are those around palliative care and end-of-life. I believe it is so very important for families to speak with their loved ones about their wishes regarding advanced directives, hospice, etc., before a crisis occurs and those issues become even more overwhelming.

From a public policy perspective, what are the most pressing issues CCAL would like to see addressed?

JP: Our nation is facing major public policy issues around healthcare today. CCAL has always believed that the greater good can be accomplished through collaborative efforts, by finding common ground through consensus among a diversity of people and perspectives.

This year, in light of the National Alzheimer’s Plan, CCAL created the National Dementia Initiative, a collaborative of 60 dementia-care experts representing research, policy, and practice to come to consensus on the philosophy, framework, and practices needed to advance person-centered dementia care in our country and around the world. The white paper, Dementia Care: The Quality Chasm was just released this week and will soon be on our website for families, care partners, and all stakeholders to read.

Clearly, issues surrounding Medicare and Medicaid are among those we are deeply involved in. We are already discussing how we can bring diverse stakeholders to the table to explore the complex issues surrounding the intersection and integration of our healthcare and long-term service systems.

Lastly, what is the best way for individuals or care professionals to get involved with CCAL?

JP: I would suggest spending a little time on our website, ccal.org, to read about us and our work. We welcome all interested parties to contact us by e-mail or phone, both of which are on our website.

CCAL is collaborating with three other national organizations to create a national Person-Centered Movement (“Person-Centered Is Better”) to make person-centered practices the standard for the way all healthcare and long-term services and supports (LTSS) are delivered and experienced. We welcome all interested individuals, organizations, and companies (local, regional, state, national) to contact us if they wish to be part of this timely and necessary Person-Centered Network.

In His Own Words

by: Amy Fox, RN, MSW, Fox Geriatric Care Management -

I asked a resident at a skilled nursing and rehab facility to tell us, in his words, what person centered care means to him.  I introduced him to the CCAL website as a starting point.  From problems with the “system” in the macro perspective, to a specific and important interaction with one staff member, he shares with us the following:

My name is Steven Wiley, and I have been diagnosed with multiple sclerosis for 20 years. This disease does nothing for you but take and take and take.  It takes your balance, it takes your ability to think, it takes your ability to feel your surrounding environment, and ultimately it takes your ability to work productively as a member of society. (more…)

I have personally experienced the importance of person centered care twice.  One time it failed me was when my doctor ordered a treatment of IV IG, which was necessary to calm down some symptoms that I was having.  We ended up going to a hospital to have the treatments done. The insurance company said that this was necessary. Each visit cost us $100. We subsequently found that the treatments were available at home for no cost! Had this information been readily available, it would have cost much less strain and concern.

A time I benefited from person centered care was with a physical therapist. Her time was up, and it was time for her to go. But she stayed to relate to me a story that her mother had taken a treatment that really helped her walking. Taking this time was important because I had never heard of this treatment. I tried it out, and it helped tremendously.

MS is not fatal, but what it can do to your self-confidence and your ability to feel like a person is almost as close to fatality as you could come. It is not true that people with MS are unable to do the things that other people do. But without the proper care and without the proper encouragement and love, that person will not be able to overcome this disease.

This is why “advanced person-centered living” (CCAL) is so important to adopt. It allows a person with MS to feel human. It allows a person with MS to be given the care that they need in order to live effectively with this disease. If properly administered, it will allow a person with MS to regain their confidence and their self-respect. The “advanced person centered living” (CCAL) is a great idea for healthcare.  It should be adopted, and the methods outlined therein for caring for people should be fully implemented.
Thank you.

CARF Accreditation: Striving for Excellence

Kayda Johnson, COO, Senior Resource Group (SRG)

Accreditation by an independent non-profit organization such as CARF (Commission on Accreditation of Rehabilitation Facilities) is a sign of quality and should be an important consideration of seniors and their families in making a decision about a retirement community. More than operational prudence, CARF accreditation demonstrates heightened care, comfort and peace of mind for residents and families.  What’s more, it signifies a provider’s dedication to offer a range of activities; emphasize resident choice; and a provider’s willingness to solicit resident feedback. (more…)

CARF’s over 1,000 rigorous standards and dedication to person-centered care are reflected in provider facilities such as Senior Resource Group’s nine locations (SRG). Through SRG’s Genuine Hospitality program, service is delivered by a dedicated group of people who truly believe residents’ well-being and quality of life is their personal responsibility. The goal is not just to meet resident needs but to enrich and enhance their lives in the process.

Just as striving for excellence is an on-going endeavor, so is accreditation. SRG is committed to continuous improvement and enhanced performance in serving its residents, future residents, and their families.  As such, in addition to maintaining their current three year accreditation status at nine communities, SRG is seeking accreditation for all of the company’s assisted living communities when they become eligible this year.

“While no easy feat, CARF accreditation is a worthwhile venture for any senior living provider who seeks to improve the quality of their services or demonstrate true value, care and consideration of their residents,” said Johnson.

Doing the Right Thing; It Can Come Naturally

by David Sprowl: Executive Director at Lutheran Towers, Atlanta; Director CCAL.

A recent and very personal experience put the concept of person-centered care in the forefront of my mind.  Last month, my 90-year old grandmother, Mama Dora, fell and broke her hip.  Until that time, she had lived independently in her own home and until her car was wrecked by her great-grandson, she was still driving.  Being the dutiful grandson, I immediately took the one and a half hour car trip to be by her side.  (more…)

In less than a two week span, she underwent successful hip surgery, a short hospital stay, rehab in another city, and was suddenly returned to the hospital with renal failure before peacefully dying.  As someone who is particularly sensitive to how individuals treat Elders, I was struck at how well the hospital staff interacted with Mama Dora.

From the aids to the nurses, to the doctors, everyone without exception focused on her.  They did not exclude my family in their  interactions, but it was clear that my grandmother held their primary interest.  They spoke directly to her, asked her personal questions about her family, about how she was feeling, etc.  Now, I must acknowledge that Mama Dora has never met a stranger, so she exerted her own personality in the exchange.

I suspected that each staff member providing care was not especially trained to be sensitive to the needs of Elders, but it was simply a natural part of who they were.  Upon asking one of the nurses, I  learned that they had not received any special training related to  eldercare.  It turns out that she and the others had only received basic patient care training delivered via educational videos.  She had never heard of culture change, patient-directed care, or person-centered care.

Often, we only hear the horror stories, but we have to acknowledge that there are those who are doing the right things for the right reasons, but lack the awareness and formal training that provides them a common language from which to speak and a platform for working at a higher level.

Although what I observed seemed to happen naturally, how much more meaningful would the experience have been if the individuals providing the care were given tools to enable them to create a culture of caring that would last beyond the current group of employees?

Person-Centered Care: Is It Actually Happening

by: Karen Love, Founder CCAL

Recent experiences have me wondering if our country does a
better job caring for and about people when they are dying in a hospice program than when they are living.  My mother passed away earlier this  year in a hospice.  The last several months of her life included numerous hospitalizations, several ambulance trips to the Emergency Department, a 10-day stay at a nursing home for rehab services, and many doctor and therapy appointments. (more…)

During this time she received care from the spectrum of health care settings including primary, ambulatory, acute, rehabilitation, sub-acute, nursing home, and hospice.  The clinical care she experienced in all of the settings – except the nursing home – was excellent.  Yet it was only in the hospice setting that she and our family experienced humane care.

While my mother was only in the hospice for five days, the staff and volunteers all took the time to get to know us, made us feel welcome and at home, were attentive to our comfort needs, went out of their way to answer questions, and even made sure we knew when food was set out.  Everyone we encountered at the hospice was kind, caring, sensitive, and thoughtful.  They were as focused on my mother’s clinical needs as her human needs.  As a result, the sad and difficult experience of dying for my mom and losing a parent -grandparent for our family was special and memorable.

In contrast, my mother’s 10-day stay at the nursing home was barely humane and mostly unpleasant.  Not one staff member took time to get to know anything about her other than her medications. Despite the fact that she was very ill and scared, the staff bathed and toileted her as if she was an object.  The environment was noisy and intrusive at night making sleep difficult.

The other care settings at least provided good quality clinical care, but ranked low in humanism.  Staff generally were hurried and only focused on her clinical care: taking her temperature; drawing blood; and delivering medications.  Occasionally someone would mention how cold a room was, but make no effort to do something about it or to get a blanket.  It was as if they had blinders on about the fact that they were caring for human beings with emotional, physical, mental and social needs.

In our family’s experience, all the talk about person/patient-centeredness was just that…talk.  It’s hard to understand why.  Not only was the time at hospice good for our family; it was the only setting where the staff seemed to actually enjoy being there.  Maybe person-centered and humane care is good for staff too.

The Cost Efficiencies of Creative Thinking: Covering the Expense of Person-Centered Care

by: Claudia S. Blumenstock, NHA, Pres. & CEO Copernicus, Inc. -

During these financially challenging times, when the idea of incorporating Person-Centered care is broached, it is not uncommon to hear a provider exclaim, “how are we going to pay for it”. The thought of integrating collaborative approaches inclusive of older adults and their care givers, may be perceived as expensive and irresponsible as positive bottom lines dwindle. (more…)

It is a misconception that change needs to be expensive. The perception that creative thinking is pricey erects barriers which can prevent or slow forward movement that initiates and sustains individualized Life-Enrichment in the lives of older people.

Ask yourself this question: What are YOUR favorite life activities? I enjoy entertaining friends. Taking pleasure in engaging conversation and laughter brings fun and meaning to my life. Thinking about the favorite experiences of someone else begins with thinking about that which brings you joy. We can relate to another person by understanding what it would be like to have or not have desired experiences in our own lives.  If “Mrs. Jones” lives in an assisted living residence and is missing her lifetime friends who don’t visit, she may be suffering emotionally, physically and spiritually by her loss. The potential health decline puts her at risk and increases the cost of her care. What if she and her caregiver create an opportunity to enjoy regular visits with friends?  Invitations can be written together, inviting them to join her for their weekly bridge game in her new home. Light snacks might be served and are inexpensive as compared to the costs of declining health. A meaningful and pleasurable atmosphere is fostered cost efficiently.

Consider this: There are several people living in a community that enjoy gardening. Residents and caregivers meet to plan a community garden. They till the soil together, creating an abundant harvest that can be shared by all. Vegetables and fruits are offered to the community’s chef and are used to make sumptuous meal offerings. Costs are minimal. The joy in the process and in the giving back is priceless.

Shift your focus and your thinking by understanding what brings meaning to you. That is the first step in embarking on the creative thinking journey and it doesn’t cost a dime.

From Person to Condition & Back Again

by: Michele Ochsner, Ph.D., Co-director Occupational Training & Education Consortium, Rutgers Univ. -

About a dozen years ago I realized that my parents’ confusion and forgetfulness was probably the beginning of dementia. The realization was delayed by the long distance that separated us and my relatively brief visits home to the Mississippi Gulf Coast.  After a period of hiring caregivers that might allow them to stay in their home, I realized it simply wasn’t possible to keep them safe.  My still strong, independent eighty year old father would decide to pay a bill on foot—undertaking a five mile walk into town in 98 degree weather–followed by my much frailer, nearly blind mother and their small dog Minnie.  Neighbors would find this sadly comic trio walking along busy roads and with no small amount of difficulty, persuade them into their cars for the ride home. Caregivers were fired or simply unable to keep up.  Miraculously my parents survived half a dozen or more misadventures that could have led to tragedy. (more…)

Recently divorced with two pre-adolescents and working full-time, I knew that I could not provide the care they needed. I wasn’t familiar with the term person-centered care at that point—but I knew I wanted to find a place near my home where my parents could make friends, find and offer affection and make a new home. My parents were simply the kindest people I’ve ever known—and I was sure that we would forge a new family that included caregivers who could keep my parents safe.

From 2001 – 2004, my parents lived in what was generally believed to be the best dementia care unit within a 30 mile radius of my home in Princeton NJ.  I loved the non-profit facility’s principles of dignity, autonomy, and respect—my parents were free to walk anywhere and would be gently guided back into the building.  But the facility provided little in the way of meaningful activities. Nor did the staff seem to engage with the residents.  My father used his autonomy to pack his pillowcase daily for return walk home to Mississippi—and my mother was equally determined to leave.  In numerous conversations, the unit director and nursing staff explained that my parents’ unhappiness and troubled behavior –to me the result of loneliness and a lack of engagement–was simply a symptom of their dementia.

In 2004 a continuing care retirement community with a dementia unit opened a few miles from my house, and my parents were among the first to move in—for a few weeks at least the staff may have outnumbered the residents.  The staff were excited about the new facility and unit and determined to create a good environment for the residents. For the first time since I had moved my parents from their own home, my parents became Doris and Bob, people with dementia—but more importantly, people, who could be enjoyed and known.  My dad rediscovered his sense of humor—words were beginning to fail him—but a wink, a military salute or a quick hug connected him to the aides and nurses.  The staff loved my mom’s southern accent and the mixture of affection, irony  and pride she exhibited toward her husband of more than 50 years.  My parents were no longer able to tell their own stories, so I told the stories of my parents’ lives —and helped build the web of connections among nurses and caregivers.  When I eventually remarried, the ceremony was held in the dementia unit decorated for the occasion with white satin bows and flowers—among new family and friends. In the face of many losses—we had all found new connections, hope and humor.

My dad was lucky to make this small, caring place his home for four years.  A little more than a year after the move, my mom fell and broke her hip.  Facility policy required that she move upstairs to the nursing home.  But until she was very frail—she would come down to sit in the common room near my dad.  At this point she had to share him with nearly half a dozen nurses and aides and activities staff who he loved, helped, and sometimes tried to protect when a frustrated resident became aggressive.  And he developed relationships with other residents—with whom he sometimes strolled the halls hand-in-hand—having conversations whose words were hard to interpret but whose affection was unmistakable.

Given the freedom to be themselves, many of the residents seemed to decline slowly here.  Problems arose on a fairly regular basis—residents became frustrated, families shared annoyances, staff were often spread too thin and not all staff engaged with residents; formal activities were sometimes uninspired…but there was still a sense of community forged by shared jokes, arguments, and small victories.

My mother had a series of strokes that left her paralyzed on one side–but upstairs in the nursing home she developed a close relationship with an aide who cared for her tenderly.  Downstairs, my father continued to heal—leaving his room in the morning with arms outspread to embrace the aides who had become like daughters.

In the face of recurrent bacterial pneumonia due to a weakened swallowing reflex, my father who had struggled so hard against a loss of control, relaxed even in the strange environs of the hospital, lighting up when I visited and taking me in his arms to croon a melody.  He was discharged from the hospital and spent his final 72 hours at home in his unit—eventually unaware of the procession of aides and nurses who entered his room to touch him lightly and say good bye and who comforted me and my husband.

My parents are gone now, and I know that we were lucky to find a place in which people with dementia are seen as more than their illness and that has managed to recruit and retain such caring staff.  My family’s experiences taught me a great deal about the human capacity for growth and healing in the face of illness. I believe that environments in which staff have the time, training and desire to see and engage with the person—not just the illness—are a crucial foundation for person-centered care and a source of life and hope even in the midst of loss and decline.  “Customer service,” a term I hear batted around in nursing homes and assisted living these days, is a pallid shadow of the kind of engagement and connection I sought for my parents and if I live long enough, may someday seek for myself.

I hope that many of us will take up the challenge to create and strengthen environments in which life can unfold.