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This simple Irish proverb has always both moved me and been a guide in my journey with persons with dementia and their care partners. Persons with dementia find that they are increasingly in need of the "shelter" of family, friends, and paid caregivers.


What sort of shelter is provided? What sort of shelter is needed?


My take on the word shelter, as it is used here, brings to mind characteristics such as inclusive, mutually supportive, nurturing, comforting. Persons with dementia find shelter from the storms of dementia with others, who honor their dignity and recognize our common needs for love, respect, meaning, joy, hope.[horizontal ellipsis] Care partners in turn find shelter from the demands of dementia care in the joyful twinkle in an eye after a shared joke without words, the warm hug and the offers of help, the gift of understanding from distressed speech, the impromptu dance to a favorite tune, the tears of sorrow in recalling absent loved ones.


Persons with dementia and care partners find shelter, a protected and safe place, a way to live together, while the ravages and raging of the storm that is dementia buffets our lives.


Historically, more concrete interpretations of shelter have predominated, with the interpretation leaning heavily toward providing physical shelter (and care) for patients with dementia. There is little mutual support here, the care takers do all of the organizing of the schedule according to the facility rules and union regulations; there are highly developed policies and schedules about the number of baths per week, the number of calories that must be consumed and at what time, the number and length of coffee breaks, etc. Patients with dementia have no say; their history, habits, and wishes have no bearing on the flow of their days. In this sort of shelter, a concerned caregiver gets fired because she dared to cause more work by buying each resident his or her own toothbrush, out of her own money, and labeling them. (Yes, this is a true story, and yes indeed there is something very wrong with this picture). The person has been lost; the medical model won out. And, the care taker has lost too, lost the opportunity to be a giver (and receiver), an innovator, to make autonomous decisions based on what is best for the person, not the building or the routine or the management (or the coffee break schedule; there is also something very wrong with the picture when an elderly person who requests to be taken to the bathroom is told to go in her diaper because it is time for break now. And, yes, this is also a true story).


Fortunately for all, both persons with dementia and compassionate care partners have and are raising their voices in protest and the literal understanding of providing shelter is giving way; we are changing over from for to with, from care taking to care giving.


In my view, persons with dementia are the revolutionaries of long-term care. They cannot learn the rules and schedules imposed by the medical model, and they would not abide by them. And good for them I say!!!! All caregivers and facilities and organizations and systems have been compelled, at the least, to listen to this valid protest. Early responses were to tighten down and support the rules (eg, with physical and/or chemical restraints); fortunately, later responses lean more toward honoring personhood, toward recognizing the needs of persons with dementia.


Here are just a couple of examples. One staff member who responded to a female patient's refusal to have her washed with a coupon stating that she has just "won" a free wash and set, which she continued to win every week. Another staff member who discovered that a gentleman who refused to eat his lunch (but ate breakfast and supper) used to work in the local mill. When she blew the noon whistle, he ate his lunch.


There has also been, and is, a chorus of concern, a call for a better way, from many, many professionals. At Alzheimer's Care Quarterly we are privileged to have had many of these special people share their experiences and research in previous issues of the journal as well as serving on the review board. Fortunately, the list of these dedicated individuals is long; unfortunately, for this same reason I cannot list you all by name here. I do want to offer, on behalf of all persons with dementia and their care partners, a very sincere thank you for caring and for your ongoing dedication; you have made a difference.


We have made many of the first steps in the long journey of changing the culture of dementia care to one that recognizes and honors the person.


In "Person to Person: Caregiver Focus," Ingrid Blais shares the moving story of Linda, her journey with Down's syndrome and Alzheimer's and how the L'Arche community worked together to change its approach to be part of Linda's final journey. In "Best Practices," Carol Riley gives a glimpse of the inspiring story of English Rose Suites and the work of Jayne Clairmont and Brent Longtin in providing genuine shelter, a family home for persons with dementia.


These are just two of the alternate models of care that are discussed in this issue; we will turn to the others in a moment.


At the same time we all know that the journey toward change needs to continue; there are unfortunately still miles to go before we sleep.


As he always does, Richard Taylor in his column "Alzheimer's Disease Experienced From the Inside Out" eloquently directs our attention to the heart of the matter, acting with truth and integrity, with Part II of his column, "Liar, Liar, Pants on Fire, Nose as Long as a Telephone Wire."


Richard's impassioned plea for truthfulness and trust, for a caregiving relationship based on integrity and honoring the person, is the essence of finding shelter together. In fact, this fundamental of all relationships becomes even more vital in relating with persons with dementia. Since one of the strengths of persons with dementia is heightened emotional awareness, they are particularly attuned to being deceived or lied to.


One of my most tragic experiences of the damaging effects of lies and deception involves a lady with advanced dementia who needed to go into long-term care. The need became especially urgent when her husband's leukemia required that he be hospitalized. The daughter, who lived nearby, did not want to become involved in caregiving and the lady, with poor insight into her limitations, was understandably reluctant to go to long-term care. The daughter persuaded her father, and the GP, to tell her mom that she was going to hospital for tests. Since the nursing home was attached to the hospital she did go to hospital and then was directly transferred to the nursing home. Until her dying day, and long after her loving husband of over 60 years had died, she continued to mention, with distress and anger, that her husband had tricked her into coming there.


In contrast, I know of another case that started out with very similar details. In this case, the community health nurse involved with the lady's care told her that she was very concerned about her husband's health (he had diabetes). The nurse asked for the lady's help in taking care of her husband by going to stay in the nursing home to give him a break. The lady was concerned about her husband's health and readily agreed to go into care; the loving bond between husband and wife was maintained.


In Part I of his column, "Trust Me!! This Is for Your Own Good!! You Know I Have the Best of Intentions!!" Richard provides us with powerful insights on another critical issue. Although I understand the point he is driving at, I do disagree, however, with his opening statement "If I ran one or more nursing homes, I would stop talking about "patient-centered care."


We still need to talk about, share it around, and yes possibly beat the topic to death, as in fact, in far too many cases, the center of care has not been the patient, the person, but, many other issues, such as the ones he mentions (medication compliance, state inspections, avoiding complaints, keeping his or her job) and many more. Richard, perhaps we can agree to disagree. We must continue to emphasize person-centered care, as this is exactly what has gone adrift; care can still be rules centered, building centered, staff centered, management centered, appearance centered.


As I write, a stomach churning incident demonstrating extreme violation of the person at a Nova Scotia Nursing home has just hit the media. Two nurses taped shut the lips of an elderly patient (who apparently called out and cried a lot). And as a further indignity, they drew a happy face on the tape. To date, the response has been suspension without pay for several days!!!! Suspension-what about firing on the spot?


McGilton, Lever, Mowat, Parnell, Perivolaris, and Biscardi in their excellent article, "Guideline Recommendations to Improve Dementia Care," along with the Registered Nurses Association of Ontario, also recognize that continuing the campaign for, and the education about, person-centered or individualized care remains vital. In the "Caregiving Challenges" column, Kay Lloyd points out in the very title of her article about the journey of herself and Fountainview Home toward change and person-centered care, "On Change: We Cannot Become What We Need to Be by Remaining What We Are."


And, with the understanding that the journey toward person-centered care for all persons with and without dementia has but begun, we are honored to offer in this issue just a few of the many inspiring examples of how long-term care organizations have responded with innovative models of care; care that recognizes the value of the person provides alternatives to the medical model that has focused on the patient and the disease not the person.


In "A Story of Culture Creation: The Alois Alzheimer Center," Gilster and Dalessandro provide both inspiration and experience-based guidelines. As master clinician Dorothy Seman often remarks, "Dementia care is not rocket science, it is harder than that." We all can continue to benefit from learning, from assistance with problem solving. In the article "Linking Behaviors and Interventions: The Impact of the Dementia Living Center in Its Home and Community," Curyto, Ogland-Hand, and Vriesman share information about this innovative response to the challenges of dementia care. We are honored to benefit from the almost 50 years of combined clinical experience and courageous campaigning for person-centered care of David Troxel and Virginia Bell in their article "The Best Friends Model of Alzheimer's Care-A Brief History and Update."


A theme throughout all of these articles is the need for ongoing education. In the "Caregiving Challenges" column, Arends and colleagues at the Rush Alzheimer's Disease Center share an innovative way to learn and network with colleagues.


Jane and her early stage support group friends want to sell the idea that you can receive some "care" and remain in control. They are looking to care team members to support more and more aspects of their lives in order to remain independent. The biggest enemy of Alzheimer's is fear.


Phyllis Dyck shares these wise words from persons with early stage dementia. Her column is, as always, a poignant reminder that it is in the shelter of each other that the people live.


We are on this journey together, learning and growing from each other about focusing on the person, about thinking outside the medical model box, about reframing how we think. After a training session one of the participants, who initially had been quite reluctant to step outside the box, offered me this story as a thank you. I in turn offer it to you.


A prisoner of conscience had been in a solitary cell for many weeks, his only companion, the steady tick, tick, tick of a clock further down the range. The constant ticking, 24 hours a day, began to echo in his brain and he found it more and more difficult to sleep. One day he spoke to one of the more compassionate guards about how this sound was distressing him, in the hopes that the guard might disable the clock. The guard responded with empathy as well as surprising question. Could the prisoner think about the clock as a constant, a companion, and be lulled to sleep by its consistent rhythm? Initially the prisoner rejected this notion, he knew what he needed to get some sleep. He needed to banish the noise from that clock. So, he tried everything, counting sheep, meditation, reading, to block out that annoying sound. Nothing he tried worked. Finally, one night in desperation he thought of the guard's question, and fell into the rhythm of the ticking. Eventually he dropped off into the best sleep he had had in weeks. He thanked the guard for helping to think differently about the ticking.