Helping families handle dementia with kindness, Projo

Monday, June 24, 2013
Helping families handle dementia with kindness, understanding
Rita Watson 
When dementia gurus meet at international conferences, the focus is often on research in which scientists look for ways to deter the memory thief. The challenge of Alzheimer’s disease takes its toll on families. The new state master plan, about to be unveiled, offers hope for patients and caregivers from a practical perspective. However, what may fall through the cracks is what to do about children or caretakers who do not know how to talk to loved ones with dementia. Rhode Island Director of Elderly Affairs  Catherine Taylor is predicting that, with education, this will change.
“One of our goals is to help every family become dementia-capable,” explained Taylor. “What has come through to us loud and clear is that training is a huge need — not just for health care providers, but for everyone who works in any capacity with people with dementia — including and especially family members.”
People with dementia oftentimes live within a different reality. A former teacher might say he has 12 sons when in fact he is remembering the high school team that he coached. A person with one child might talk of having two children perceiving one who is good and brings chocolates and the other is the one who argues, “You don’t have two children, just one. Me.”
As such, many Alzheimer groups and specialists in the field suggest entering the patient’s reality, because arguing and contradicting them is upsetting and counterproductive. Some are voicing concern that repeatedly chastising dementia patients can become a subtle form of verbal abuse. The kindest and most effective response is to work within their reality, even though it’s a reality we do not share.
Taylor says, “Dementia behaviors are truly challenging — especially to a family member who is exhausted and experiencing a deep sense of loss as their loved one slips away from them. A frustrated reaction is natural — but only serves to exacerbate the difficult behaviors. Most family members crave better communication strategies so we want to get that education to them.”
Taylor recommends resources such as the book “Kisses for Elizabeth”, written by Stephanie Zeman, slated as keynote speaker at the upcoming Alzheimer’s Association conference.
She pointed out, “Unfortunately, some family members exploit the vulnerability of the elder with dementia, and intentionally abuse them verbally, physically, or financially.” Taylor urges anyone who sees this behavior in a nursing home to contact the office of the Long Term Care Ombudsman.
Nonetheless, mindful of the frustration and exhaustion that caregivers experience, especially with loved ones at home, the state plan encourages more respite care centers to give them a chance to recharge. It is estimated that 15 million Americans are now providing unpaid care for a family member with Alzheimer’s, which affects one in eight older Americans.
The Rhode Island State Plan for Alzheimer’s Disease and Related Disorders began in the spring of 2012 as a collaboration between the Rhode Island chapter of the Alzheimer’s Association, the Division of Elderly Affairs and the office of Lt. Gov. Elizabeth Roberts. It is to be unveiled Tuesday at the statewide meeting in Warwick: Caregiver’s Journey: A Conference for Caregivers and Healthcare Professionals. The statewide plan addresses access, legal issues, workforce concerns, long-term care and research with recommendations after each section in the 50 plus page document.
The working groups brought together the state’s resources including the Geriatric Education Center at the University of Rhode Island, Brown University Center for Gerontology and Health Care Research, the Brown Brain Bank, Norman Prince Neurosciences Institute, and the Alzheimer’s Prevention Registry.
The recommendations are thoughtful and vital plan to make Rhode Island, and our own families, dementia-capable.
Rita Watson, MPH, a Providence Journal columnist, is a 2013 MetLife Foudation Journalist in Aging through the Gerontological Society of America and New America Media.