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 Maggie: A Case Study In Dementia Care

Before “Maggie” developed severe dementia, her gregarious personality had led her to find much joy in her many social activities.
 
But after the diagnosis, and after her condition worsened to the point that she could no longer live in her own home, her family moved her into an assisted living facility.
 
The facility was large and unfamiliar to her. Staff tried to pull her into social activities, but she resisted, and as time went along she became increasingly withdrawn and isolated.
 
What had given her so much joy throughout her life was now inaccessible to her. On top of that, she started falling and hurting herself, and health care professionals all know what a bad fall can do to an elder’s longevity.
 
Maggie was losing the ability to feed herself and had lost significant weight, so she was moved to the dining room and assigned a feeder.
 
She appeared anxious, so her doctor put her on Ativan three times a day. While Ativan can help relieve anxiety, it can also make people, especially the elderly, lethargic. That may well have contributed to Maggie’s steady drift toward even fewer interaction with others.
 
Her family tried to compensate by increasing the time they spent with her, but it seemed to do little if any good. They were losing their mother, even more than they already had.
 
Finally, they decided she was just wasn’t going to get any better on the path the facility was taking, and out of a desperate need to keep their mother with them as much as she was able to be, they researched local options for dementia care and settled on English Rose Suites, an assisted living chain that featured beautiful family homes in upscale Minneapolis neighborhoods.

A New Chance At Life At English Rose Suites

When the staff at English Rose Suites first met her, they were concerned that Maggie was very passive, an observer of her restricted world rather than a participant in it.

Staff talked with both Maggie and her family to write up Maggie’s life story so they would know what things had been pleasurable or comforting to her in the past, and so they could identify things that might trigger feelings of fear, uneasiness, or anger.

At first, their approach seemed to work: She started smiling at staff.

But one day they found her completely wrapped up in a blanket like a cocoon that covered her from the top of her head to her toes. Staff were worried that this meant Maggie was feeling very frightened and unsafe. Maggie would eventually come out of her cocoon, but it wouldn’t be long before she was once again tightly wrapped.

And when she was unwrapped, the moment a staff member touched her in order to provide personal care, such as toileting, dressing, or showering, she screamed at the top of her lungs.
 
The nursing team evaluated Maggie to make sure she wasn’t in pain, and found that wasn’t the issue. Jayne Clairmont, owner and operator of English Rose Suites, solicited ideas from all her staff, not just the leadership team.
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Clues For Making Maggie Happier

To try to make bathing more pleasant, staff decided to heat the bathroom before taking her in and dry her off with towels fresh from the dryer. They also installed a rolling shade over the sink mirror, as Maggie appeared to be fearful when she saw the person in the mirror.

Another strategy they tried was intensive aromatherapy. Caregivers rubbed the essential oil of lavender on her skin every two hours to surround her in a familiar and comforting scent.

Just in case Maggie was experiencing some level of pain, Clairmont’s staff made sure one of the essential oils that eases muscle stiffness, joint pain, and aches was rubbed into her body first thing in the morning when the elderly tend to be most stiff and uncomfortable.

Staff noticed she had difficulty finding the right word when she wanted to express herself, so they worked hard to understand the particular way her mind tended to find a certain kind of word when reaching to express a completely different one.

All of this required intensive one-on-one time getting to know Maggie very well.

Because Maggie so clearly needed comfort, staff took every opportunity to give her a warm hug or sit or walk with her, holding her hand so that she might feel less alone in this strange new world her brain had drawn her inexorably into. Staff discovered that Christian music gave her joy, so they played it for her frequently.

A couple of weeks passed, and gradually Maggie became calmer and more at ease.

Their efforts were so successful that Maggie was able to go entirely off the lethargy-inducing Ativan she had been taking three times a day. She doesn’t even need it PRN (as needed) anymore. Staff even discover, to their delight, glimpses of joy in Maggie’s eyes.

What Underlay A Successful Outcome

Perhaps these interventions and their results seem simple, but far from it.

The staff’s success was built on months of intensive training in a new kind of dementia care that emphasizes establishing very deep and real relationships between primary caregivers and the resident and an ongoing effort beginning with initial assessment to not just know a few things about each resident, but to really understand who they were before the dementia, who they are now, and how the two states relate.

This intensive approach also requires a great deal of support for staff to keep the turnover rate low, because any time the person a dementia resident has built a primary relationship with disappears, she becomes frightened and anxious again, and the whole process has to start over.

It also requires an organizational culture of constant evaluation of how their interventions are working and striving to learn or develop new ways of being even more effective. Such a culture doesn’t allow for “finally getting it right and sticking with it.”

People with dementia change over time, and every person experiences dementia differently, so ongoing evaluation, brainstorming, benchmarking, and learning are essential components of making this work.
All of this takes time, but it works, and leadership has to decide whether they are more concerned with the time taken or with the outcome of happier residents who are easier to care for.

And it never stops being hard work; Maggie doesn’t have a perfect day every day. She just has hard days much less frequently, and she has moments of joy now where before everything was psychic pain and fear and confusion. English Rose caregivers have learned that striving for excellence must become a way of life, not a plateau to achieve and then rest.
 
Kathleen Lourde
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