Consultant, New England QIN QIO, Healthcentric Advisors
Margaret was a lovely, wisp of a lady who was living with dementia and came to live with us when circumstances were such that staying at home was no longer an option for this bright and cheery soul. Though her language skills had diminished to near non-existence, she communicated clearly through her love, effervescent personality and generous spirit. Much of this love was heaped upon a small doll that served as Margaret’s constant companion. It arrived with Margaret and was never out of her arms. They slept, ate and spent the day together chatting about all manner of things! It wasn’t long before we realized the importance the doll played in her life. With her companion by her side, Margaret was in her comfort zone; she lived fully into her best self. What we came to understand was that Margaret’s doll supported her identity as a caregiver and mother. The doll became a part of Margaret’s care plan to ensure that the comfort it provided would be available to her without interruption. This required some planning as the doll was often in need of a bath due to her sharing Margaret’s meals. Only once had the doll been withdrawn from Margaret’s motherly arms causing such a great disturbance that it was decided that the doll would be bathed late in the night by the night shift and tucked back in Margaret’s arms before dawn to avoid any discomfort on Margaret’s behalf.
Seeing how much the doll meant to Margaret and the comfort that it brought, our ladies auxiliary offered to buy a collection of dolls so that everyone who wanted one could have a doll of their own. The offer, of course, was met with appreciation. It might surprise the reader to know that the offer was declined. The caregivers who worked most directly with residents who were living with Alzheimer’s disease had come to recognize the value of creating very personalized interventions to support the comfort and well-being of each person. They were champs at it too! For one man, John, they had a box that contained an old pipe, a pair of leather slippers and a wallet filled with memorabilia. Another had a box that contained a small cassette tape player and tape with the recording of a woman’s family saying the rosary together. With her headphones on, you could see her utter delight as she exclaimed, “there’s Janey!” She would proceed to say the Rosary with her kids. All of these small offerings went a long way to help folks to be connected and comforted. We called it “the zone” and, as caregivers, we did everything in our power to keep people in “the zone” and avoid what we described as a “comfort crisis.” It happened because staff knew their elders so well and recognized when they were becoming discomforted. They could anticipate elders’ needs and jump in with specific personal interventions-for one, it was a soothing back rub, for another, a walk to the chapel and yet, for another, it was making a pot of tea in an ol’ brown betty. That is person-centered and deliberate. Interventions such as these are those that begin to create an environment where person-centered care can flourish. So often, care plans read “redirect” as some generalized marching order — a vague notion to get people with Alzheimer’s disease distracted when instead, it should offer ideas that soothe and comfort, prevention strategies that keep folks from becoming bored or lonely. Oh, and there is so much more that can be said and done within this context!
That’s why the ladies’ auxiliary’s offer was declined. To accept those dolls and dole them out to anyone would institutionalize a person-centered practice. It presumed that what was good for Margaret was good for everyone. And really, haven’t we had enough of that?! We had spent many years as a community, trying to break out of old routines and institutional practices like putting everyone to bed by seven in the evening or making everyone eat at the same time and sit in the same seat. Beautiful communities have arisen recognizing the need to support elders in creating meaning and purpose for their day and to frame their own day and life in the best possible way. The best way to do this and the best reminder to all of us was offered by the early Pioneers who provided us with these values:
◆ Know each person
◆ Each person can and does make a difference
◆ Relationship is the fundamental building block of a transformed culture
◆ Respond to spirit, as well as mind and body
◆ Risk taking is a normal part of life
◆ Put person before task
◆ All elders are entitled to self-determination wherever they live
◆ Community is the antidote to institutionalization
◆ Do unto others as you would have them do unto you
◆ Promote the growth and development of all
◆ Shape and use the potential of the environment in all its aspects: physical, organizational, psycho/social/spiritual
◆ Practice self-examination, searching for new creativity and opportunities for doing better
◆ Recognize that culture change and transformation are not destinations but a journey, always a work in progress.
In health care, person-centered care is where the patients actively participate in their own medical treatment in close cooperation with health professionals. Being person-centered means affording people dignity, respect, and compassion. Whenever someone interacts with health services. As myself who works in healthcare will attest, patient-centered care has taken center stage in discussions of the quality provision of healthcare.
Margie, Thank you for this Article. It really is, a bond that strengthens ones’ connection and making that individuals reality as real as it can be. Knowing them is more, but fulfilling purpose and keeping promises of making individuals secure, during this stage of life. Is what it is all about !
Thank you for the great article reminding us not to institutionalize person-centered care. I often feel that providing person-centered care has become just another task that staff feels they have to do – often without real meaning or personalization for the person living with dementia.
I do have a concern about dolls and robotic pets being used to comfort people living with dementia. In our culture that devalues older adults, especially those living with dementia, it can be so important to offer opportunities for real relationships and real purpose in their lives. I would love to see volunteers or the Ladies Auxiliary offer to arrange frequent visits with the local preschool or sponsor a lovely dog that could reside in the nursing home and be a real companion. I know that people use dolls to comfort the elders but placing a doll or robot with a PLWD reminds us of their diagnosis instead of their retained abilities for meaning and relationships.
Margie, I got a chuckle out of your explanation, “And really, haven’t we had enough of that?!” I also like your terminology, “the zone” and “comfort crisis.” They are precise, effective terms to use when in-servicing care partners.
And just a reminder, there are dementia-friendly, adapted booklets that serve as a personalized means of soothing someone, sparking an elder’s innate curiosity, allowing an elder to pursue their individual interests, and kindling a social/emotional connection between two people.
Thank you for a great article. It brings up somethings that often gets lost when we place our loved ones in long term care. I work in a long term care facility and we have found that the animated cats and dogs gave great comfort to some of our residents. The dogs and cats are costly and that may be something the ladies auxiliary may think of purchasing . Another great item is IPODS with personalized music. I will frequently see a resident with ear phones singing away to the old songs that brought them great comfort in there younger days. Grace, Peace & Love
Way to go, Margie, you are always on point. This made me wonder, what would provide me comfort, perhaps I need my laptop!
Thank you for sharing Margaret’s story, a wonderful demonstration of person-centered care.
Margie – You are an inspiration to all of us in the caring community as we all work to find processes that help one another – be they individuals living with dementia, family members struggling to accept unimaginable changes, or care partners who sometimes need a shoulder to lean on– each of us has our own systems that put un in the positive zone (or a negative zone). And understanding what that is for each individual person is the key. You stated it so beautifully!
Marguerite, your article is priceless! You provide a marvelous model for what is most important in honoring the individual. And you write it so well! Thank you for the article and for the marvelous work you have done and continue to do.
Thank you for your comments, Imelda! We are proud to have Margie serving on our Board and as Chair of the Education Committee.
So well put Margie – thanks! This helps us also think about why do we use something like a doll, or a wallet or a recording. I know there were confused feelings and opinions when the Network had a vendor of these types of items at our conference. There were some who said absolutely not and why would we think a doll vs a real child or an automated stuffed animal instead of real. You point out that it isn’t yes or no question but a question of how is this person and what offers comfort, identity reminder, and actually occupation – all things that a person living with dementia struggles to provide for themselves.
That’s why we loved Margie’s article so much too, Megan! Thank you for your comment.
Thanks for the great article, which I’ve referenced here: http://myalzheimersstory.com/2019/01/30/10-practical-actions-that-foster-real-person-and-relationship-centered-care/
Thank you for your comment and for referencing Margie’s article. Please let your readers know that the bulleted items are the Pioneer Network’s Values and Principles.
Beautiful…Thank you for this powerful essay!
Amen! I once had a nurse tell me that, “…we put on classical music and that’s good enough.” My contribution to this area is promoting the idea of training volunteers to become the “…eyes and ears…” of staff who are often overwhelmed with providing the basic cares. Whereas, the volunteer thoroughly vetted, well-trained and under the supervision of a professional, has the “…luxury of time.” Volunteer programs take it on the chin because they seem to be unreliable or not sustainable. The reality is the volunteer program was an “add-on,” and not managed by a trained volunteer coordinator so it was doomed to produce mediocre or no results. I’ve had volunteers actually change their career path to become nurses, administrators, and activity directors. I even had an accountant leave their corporate life to become the accountant for the nursing home near their home! So that volunteer program becomes a conduit for attracting new workers. And that is how I and many of the people I talk with got into long-term care. I play the saxophone and I tell people that I went to the nursing home to play some music for the people living there and never came back.
Thank you for your enthusiastic comment, Paul! Here’s to volunteers!