The High Cost of Alzheimer’s Disease

Last week’s heartbreaking news about basketball’s winning-est coach, Pat Summitt, being diagnosed with early onset dementia, Alzheimer’s type, re-focused our attention on this terrible disease and its impact on unsuspecting victims and their families. (Please don’t misunderstand: all Alzheimer’s cases are heartbreaking. Only some get more press than others. In this case it was the legendary woman’s basketball coach from the University of Tennessee). 

We have so much to learn about Alzheimer’s: Experts have yet to pinpoint its cause although researchers believe that it could result from a combination of genetic and environmental ‘risk factors.’ These could range from one’s educational level and mental health to conditions stemming from people’s dietary habits such as increased blood pressure and high cholesterol.

The Fisher Center for Alzheimer’s Research Foundation has come up with the ‘top ten’ Alzheimer’s signs and symptoms, starting with memory loss and difficulty performing familiar tasks like preparing a meal or making telephone calls to changes in mood, behavior, and personality as well as loss of initiative.

Identifying Alzheimer’s cases poses major challenges. Among the most popular measures of dementia and an effective way to track changes in one’s cognitive impairment is the ‘mini-mental,’ short for the Mini Mental State Exam (MMSE). While not conclusive the mini-mental enables practitioners to assess possible dementia patients with a 10-minute, 30-question tool.
What’s most breathtaking is Alzheimer’s human and financial toll. The Alzheimer’s Association’s 2011 Facts and Figures Report, states that 5.4 million Americans (one in eight older Americans) suffer from the debilitating illness. This number will increase as the baby boomer population ages.

Coach Summitt can expect to have an impressive support system, including her devoted 20 year old son, Pat. Many Alzheimer’s patients, however, may have only one caregiver saddled with a multitude of housekeeping, nursing, and personal care responsibilities. In 2011 almost 15 million Americans provide unpaid care for persons with Alzheimer’s or other forms of dementia. It’s estimated that in 2010 they provided 17 billion hours of unpaid care, a contribution to the nation valued at more than $202 billion. Less measurable , but as tangible is the degree of stress and depression that comes with Alzheimer’s care giving. 

If you know such a caregiver, you can provide a compassionate ear, an invitation to dinner or a night out, an offer to spell them.   If you are such a caregiver, Alzheimer’s Association can help.  See http://alzheimersassociation.org/index.asp.

Sig

The Moment of Change

Every time I talk about my work in Tough Conversations I hear a story. And most aren’t very happy.
Recently a friend told me about her parents who live in Buffalo. Her Dad has early Alzheimers; Mom has been his caregiver. My friend and her brother both live in Washington. Mom was doing fine as caregiver until the day she fell on a freezing sidewalk and broke her right wrist. Unfortunately she could not stand up using only her left arm. And she had neither a cell phone nor wore a Lifeline emergency call necklace. The streets in her neighborhood were deserted, and there was no one to whom she could shout for help.
My friend told me that her mother had to drag herself through the snow some 50 yards to the door of a neighbor who thankfully was home and could call 911.
That day life changed radically for my friend and her brother. Since her mother could no longer cook, perform housekeeping chores, or care for her husband, she and her brother would now have to fly to Buffalo on alternate weeks to care for her Mom and Dad.
In retrospect it was only a matter of time before such an event would alter the delicate balance of care and support that she, her brother, and their mother had created around the deteriorating state of her Dad. What could this family have done to save her mother the indignity and discomfort of dragging her exhausted body through the snow to her neighbor’s front door? As important, what steps could they have taken to ensure that the adult children’s lives wouldn’t have to change so drastically?
1. Provide her mother (and every caregiver for that matter) a Lifeline or other kind of emergency call system.
2. Ditto for a cell phone.
3. Compile a resources folder with a list of local caregiver agencies, doctors and their phone numbers and addresses, as well as a run-down of emergency facilities and police.
4. Develop a contingency plan for the day when Mom might not be able to fulfill her caregiver responsibilities. This includes a move to Washington or wherever the adult children live.
The list goes on. But the most fundamental question remains: When should contingency planning begin?
The answer is: NOW.

Sig Cohen, Tough Conversations, a Division of Beyond Dispute Associates.

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