While medical records can’t tell the stories that patients with Alzheimer’s deserve, home care and hospice professionals can. This Alzheimer’s & Brain Awareness Month, you can better honor those lost in dementia symptoms by practicing person-centered care to make the transition more comfortable for everyone involved in the care process.
Home care and hospice professionals share a very special bond with patients who have been diagnosed with dementia and related disorders. The list of diseases that cause cognitive impairment is immense, and the impact on the patients and their loved ones who suffer from the effects can be heartbreaking.
To lose a memory is to have a piece of time stolen. The resulting anxiety and agitation that patients with dementia symptoms experience is unlike any other process. As healthcare providers, we watch this process in a state of awe and wonder, always thinking of what we can do to make things easier, less uncomfortable, and generally give a sense of peace to everyone involved in the care process. It is a gift to be able to care for these individuals, and they are especially remembered this month, during Alzheimer’s & Brain Awareness Month.
Remembering the “Watch Room”
I have worked in the home health and hospice fields in our area for the better part of the last decade of my career. After embarking on this remote nurse author career, I recently decided to volunteer at a local nursing facility to feel the fulfillment from having some simple human connections.
My husband works as a nurse practitioner at one facility, and he decided to accompany me one evening before we had a date night. We were there solely as visiting volunteers trying to bring some smiles and shake some hands, we had fun doing just that.
I went into one room at the suggestion of the staff to visit, and realized right away it was a former patient that I cared for in his home during my home health days. Mr. Davis was one of my favorite patients; he had frequently been my volunteer patient to help me precept new staff to learn how to function in home health. He loved it when I was teaching new staff, welcomed it, was sharp and intelligent and enjoyed meeting new people, making him an excellent first care experience for them.
He had chronic wounds as a result of living in a wheelchair since he was a child, following the Polio epidemic. He was weak, frail, and had frequent and recurrent needs for home health services with a long list of comorbidities.
But to me, Mr. Davis was not defined by his various healthcare needs, but by his art. He was a watchmaker and an artist, made and fixed watches, had a side business dedicated to his art in his retirement, and generally could talk for hours about his love of timepieces. He had a room in his home dedicated to watch repairs, and I would have to drag him out of the room to perform my care plan orders. He tried to explain the inner workings of the timepieces to me many times, fixing any broken piece of time that he could.
When I found him, he was much more debilitated, barely using his electric wheelchair. I held Mr. Davis’ hand, gave him a hug, and swallowed the hard lump in my throat as he clearly spoke with symptoms of dementia. I told him that I remembered him in his “watch room,” as he called it, and would always think of him tinkering there. He could not converse with me very much, but when I mentioned his room, he squeezed my hand so hard—there was something in him that understood the words I reminisced to him. Mr. Davis’ wife walked in to the room as I was leaving and she remembered me as well. She thanked me for visiting and was happy that I was there to volunteer.
Replacing the Clock Batteries: Forming Connections
Later my husband told me, “The clock in his room is broken, and his bed faces it. I wonder if it bothers him. His eyes lit up when you talked about his watch room, I’ll make sure that it gets fixed. We have to do that for him.”
I didn’t notice the broken clock in the room, but it turned out that my husband was the assigned provider for the couple, and able to indeed get the clock fixed the next day. My husband also told me that he never realized the real history of Mr. Davis because he didn’t know how to ask. He told me that I spoke so easily to Mr. Davis and his wife and that he envied my memories of them when they were healthier, and I responded, “Well I used to know them!” I knew a tiny part of who they used to be.
My husband was new to this particular facility, and the demographic information in an electronic medical record did not tell the story that Mr. Davis deserved. That is common, and not the fault of any human or program—it just happens. My husband was fascinated at the little bits of this man’s life that I knew from caring for him in the community.
It made me think. What can we all do as home care and hospice professionals to better honor these individuals who are lost in dementia symptoms? How can we better understand their minds as they struggle with symptoms? In Mr. Davis’ prime, he could never tolerate looking at a stopped clock. He would have to fix it, but now because he cannot, my husband did it for him.
Embracing Connection with Patients
For those caring for patients diagnosed with various dementia disorders, are you really looking into what you may be able to do to form a connection with them? Dig a little deeper. Replace the clock batteries.
My husband later told me, “I need to ask more questions about the life that these patients led.”
That statement struck me. Do you and your staff keep looking or digging to form connections with patients? Do you embrace it when your staff fosters that human connection with patients and their loved ones? The answer should hopefully be “YES, I encourage and celebrate that all the time!” But if the answer is “No,” or “I don’t know, I’m not sure,” then let’s fix it.
Use this month as a restart. Your staff all entered health care because they have a unique, shared level of empathy for patients and families. It is easy to lose some level of that empathy when you become lost in the daily grind of health care.
For patients with various forms of dementia, it may seem daunting to find a connection, but it is possible and will lead to a renewed sense of fulfillment. A recent article from the Gerontologist, published in 2018 by Fazio, Pace, Flinner, and Kallmyerand reviewed by skilled clinicians, was funded by the Alzheimer’s Association and carries a wealth of interesting material. Relevant for years to come, the review chiefly discusses the concept of person-centered care. Instead of our health care industry term, “patient-centered,” the term “person-centered” jumped out at me; after all, patients are people first!
Share these valuable “Practice Recommendations for Person-Centered Care” with your staff this month and encourage them to celebrate their patients and focus on the person.
Practice Recommendations for Person-Centered Care
Know the person living with dementia. Alzheimer’s Disease and related disorders are challenging and certainly take away pieces of the individual, but no patient will lose what makes them unique. Ask about interests, values, strong beliefs, any likes and dislikes that you may be able to use to strengthen interactions.
Recognize and accept the person’s reality. Always take the perspective of the patient into account and how they may be feeling. Be empathetic and validate their fears, anxieties, and especially their positive and happy moments. Remember that their reality is very different, and respect that they have no other choice.
Identify and support ongoing opportunities for meaningful engagement. Make every visit engaging and purposeful. Allow for every completed task to be a success and celebrate what patients are able to accomplish, even with your help. Find positive distractions and make your presence fulfilling to the patient.
Build and nurture authentic, caring relationships. Always show dignity and respect to patients and families dealing with dementia symptoms. Focus on “doing with” and involving everyone in the care of the patient, rather than “doing for” and focusing on task completion without truly supporting the patient and other caregivers.
Create and maintain a supportive community for individuals, families, and staff. Provide opportunities for shared experiences, and show your support consistently for patients and families and other staff. Celebrate the strengths of the village members involved in the care of the patient. Remind them of these strengths, particularly during challenging moments.
Evaluate care practices regularly and make appropriate changes. Change your care plans as you need to, adapting to the needs of the patient. Don’t be afraid to reach out for other resources, ask families how they feel about care plan progression, etc.
We would love to hear your own realistic tips that worked to form bonds, and keep staff, patients, and families working cohesively as a team to bring that peace to everyone involved in the care process! Leave a comment to help others in our industry provide person-centered care this Alzheimer’s and Brain Awareness Month.