Handling dementia
A caregiver’s guide
Around six million Americans have Alzheimer’s disease, and that number is expected to reach 15 million by 2060.
In 2017, 47 million more had preclinical AD; they suffer neurodegeneration and/or amyloidosis, the beginnings of those amyloid tangles that are thought to (sometimes) characterize AD. And around six million in the U.S. and Canada have a non-AD dementia that affects behaviour and may cause apathy, disinhibition, personality changes and loss of executive function — that is, the ability to plan ahead and get organized — like Parkinson’s disease or primary progressive aphasia syndromes (affecting speech) or a form of dementia that can happen as a result of vascular disease, high blood pressure, stroke, diabetes or idiopathic normal pressure hydrocephalus (iNPH).
But dementia affects far more people than that. Loved ones, caregivers, friends and family all are affected. One study in JAMA found that caregivers 66 and older were at a 63 per cent increased relative risk of dying than noncaregivers. And AgingCare.com says that fully 30 per cent of caregivers die before the person for whom they are caring.
The strain, anger, guilt, remorse and stress are devastating and make it harder on both the patient and the caregiver. That’s why a new Florida Atlantic University College of Nursing study is so groundbreaking. The researchers designed and tested a program to facilitate communication between people suffering from dementia and their caregivers. The results of their 10-week study have been promising for both.
The study was a home-based intervention called CARE, or Caring About Relationships and Emotions. Fifteen older couples agreed to meet with a facilitator, alone and together, once a week to discuss and develop their communication strategies, both verbal and nonverbal.
The researchers took this approach because of the frustration caregivers often feel when they mistakenly engage their loved one in a way that raises tension on both sides. For example, a caregiver may choose to go over a family photo album and ask the afflicted spouse if he or she remembers the family vacation in Wyoming in 2005. When the person with dementia cannot remember, both parties end up feeling terrible. Clearly, that’s not an effective communication strategy. The researchers call it a “disabling conversation.” They want caregivers to understand that you can’t jar a person’s memory when much of it has faded away. A different approach is what this intervention study is all about.
Step by step, the researchers took the caregiver through various ways to promote interaction without increasing tension and unhappiness. And they showed how to help a dementia patient become engaged in sociable conversation.
Interestingly, care receivers with moderate dementia improved more than caregivers. Care receivers increased their verbal and nonverbal social communication, were more interested and engaged, maintained eye contact, responded to questions, stayed on topic, and even joked with and teased their partners. And that, in turn, decreased caregiver stress.
How can you take advantage
of these techniques?
The Alzheimer’s Association (www.alz.org) has local chapters across the country that are aware of this study and of these communication techniques — and they offer online help in the form of programs and classes, plus a 24/7 helpline: 1-800-272-3900.
They can put you in touch with a medical professional who can first properly diagnose the condition (remember, not all dementia is Alzheimer’s) and then help you move forward from there.
Getting the right diagnosis is a crucial first step. For example, dementia caused by iNPH may be completely reversed with the proper treatment. It’s estimated that more than 700,000 Americans have iNPH, but less than 20 per cent receive an appropriate diagnosis (the person’s gait is a tip-off, and a good doctor will know that). It’s often misdiagnosed as Alzheimer’s or Parkinson’s disease.
There’s a lot to know about how to handle AD and other dementias, so if you or a loved one is affected, the sooner you have answers the better off everyone will be.