Providing Support for Dementia Patients and Their Caregivers
by Margaret Heale, RN, MSc, CWOCN
Matron Marley is back after a small break (that allowed me to vent about the lack of 'clean' with a 'clean dressing technique').
As a volunteer in my local nursing home, I look at and ponder the past, present and future of nursing. My perspective is a little different as I was a matron in a British hospital in the 70s. Perspective gives the mind greater depth and a more complete understanding of the nature of what we see. You may think that nursing is the same wherever you go, but of course culture and history mold us differently when there is time and distance between us. Here, at this skilled nursing facility I watch, listen and help where I can.
The Progression of Dementia
There was a couple admitted last week, they shared a double room the first week. The man use to be tall and proud. I knew of him then. He had a Corvette and drove to every home football game, never missed one. His wife, a delicate sort, had rheumatoid disease that recently settled more but not before the joint replacement surgery and pain took its toll. Her husband saw her through the surgery and pain, but with a rather detached indifference to her plight. They grew old together, managing with the help of a younger close friend they thought of as their son.
When his support was no longer enough, they went to an assisted living facility but within a few weeks his behavior deteriorated and they 'couldn't handle' him. So to us they came. I had not seen him for a while, and he was a truly a broken man, his kyphosis forcing him to look at the ground, not able to look at a soul. With no control over his life and even less patience, he had become aggressive, his wife tolerated this until someone realized all was not well. They were separated. She flourished in her new environment. He died.
I spent time with him as his dementia progressed and he deteriorated, the man talked of football and refused to drink. He hated that he had become dependent, a burden, with no way to take back control. His story is not unique but it touched me because I had known him, though not well.
Dementia-Related Behavior Management: Then and Now
In the past, as with some facilities even now, his aggressive behavior born from despair and frustration related to his dementia would have been addressed with restraints and possibly sedatives. The move now is away from this with the use of distraction, therapies and of course one-on-one sitters. It is amazing that restraint jackets and net beds are used when having someone stay one-on-one with the person works so well. I really enjoy the opportunity, one hears such interesting stories. We used alarms a lot for a while but often the alarms go unanswered due to staff being busy elsewhere, and alarm fatigue sets in. We have seat pad alarms and I noticed the other day that a nurse assistant had put the thick, quite hard pad on top of a patient's support cushion! I think the ones that have a magnet with a clip are preferable.
Support for the Home Caregiver Living with Elderly with Dementia
How people cope in their own home with such dementia-related aggressive behavior is even more problematic. Even the most loving of partners can get to the end of their tether and lash back at times. It is such a grand idea to keep the elderly with dementia in their own homes, but the caregiver/partner needs support and it is not always there. Being a caregiver all day every day, morning noon and night is wearing. There is no let up and when aggression rises up, lack of sleep, or just an inability to let this too slip by, can lead to a sudden slap, hard pull, push or tight squeeze. This is followed by guilt and over compensation with nothing visible to outsiders but more and more stress for the caregiver.
The adult day centers that have developed in most areas can be enormously helpful at giving caregivers the break they need. This is the future, I think: good quality assisted living and skilled nursing facilities offering daytime care for people who are being looked after in their own homes. It makes sense as the daytime care is able to act as a bridge for those clients that deteriorate and need full time placement. Transitioning from home to facility becomes less traumatic for everybody not just the resident.
There are many reasons why people being looked after at home need admission to a facility and the process is often multifactorial; caregiver stress, illness, aggression, wandering, incontinence, constipation, urinary tract infection, acute hospital admission and inappropriate behavior are all factors that may contribute to a decision to admit a loved on the a facility. Utilizing adult day care as a venue for support and education should have the added benefit of delaying full-time admission.
Online Support Resources for Caregivers and Patients
Another future I see is a different kind of support for people in their own homes: virtual support. I personally am not that computer savvy, but as the generations behind me grow older they will go for support where they go now – online. Currently, we use large calendars, reminder alarms and memory magnets (for the fridge).
One elderly gentleman I helped with for a while was struggling to retain his short term memory and I came across a 'cheat sheet' he had made. I asked 'what is this list for' and he replied it was so he could correctly answer all those 'silly questions' the doctor asks him. Nowadays a simple app on a smart phone could help to keep things on track, at least for a while. I have friends who don't bother with lifeline as they carry their cell all the time. I wonder if those people who currently think they can drive and text will retain their ability to text when they have Alzheimer's disease. I think not but I am sure computers will help that generation in ways we cannot imagine at this point in time. A simple orientation robot is absolutely possible now but it might have to be crash tested for some of us (I am thinking about how much joy taking a mallet to my computer would give me).
I am rather pleased I don't yet need more than a pill planner and my Kegel exercises, as visions of Hal reminding me it is Monday and time for me to put on my coat and wait for 'The Ride' to take me to adult day care appeals to me not at all! Yet here I am at a SNF watching, and listening.
About The Author
Based on her extensive nursing experience Margaret Heale, Wound, Ostomy and Continence Nurse, takes us into the blog journal of a fictitious matron, "Perspective of Nursing Care from Past to Future by Matron Marley."
The views and opinions expressed in this blog are solely those of the author, and do not represent the views of WoundSource, Kestrel Health Information, Inc., its affiliates, or subsidiary companies.