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Handling dementia: A caregiver’s guide

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    A resident speaks with residence director Gunter Wolfram in the Alexa Seniors’ Residence in Dresden, eastern Germany in 2017. The retirement home has recreated the communist era of the former GDR in two living-rooms to help residents with Alzheimer’s and dementia.

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 Alzheimer’s. They suffer neurodegeneration and/or amyloidosis, the beginnings of those amyloid tangles that are thought to (sometimes) characterize Alzheimer’s.

And around six million in the U.S. and Canada have a non-Alzheimer’s dementia that affects behavior 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.

Loved ones, caregivers, friends and family all are affected by dementia.

One study in JAMA found that caregivers 66 and older were at a 63 percent increased relative risk of dying than non-caregivers. And AgingCare.com says that fully 30 percent of caregivers die before the person for whom they are caring.

Researschers of a groundbreaking new Florida Atlantic University College of Nursing study designed 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.

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 (alz.org) is aware of this study and of these communication techniques — and they offer online programs and 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 idiopathic normal pressure hydrocephalus may be completely reversed with the proper treatment. It’s estimated that more than 700,000 Americans have this condition, but less than 20 percent 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 Alzheimer’s and other forms of dementia, so if you or a loved one is affected, the sooner you have answers the better off everyone will be.


Mehmet Oz, M.D., is host of “The Dr. Oz Show,” and Mike Roizen, M.D., is Chief Wellness Officer and Chair of Wellness Institute at Cleveland Clinic. Email questions to youdocsdaily@sharecare.com.


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