Thursday, April 28, 2011

Preparing for Changes With a Progressive Disease

During this morning’s Town Hall Forum for caregivers, Dr. Daniel Sewell suggested ways for families to prepare for the various stages of Alzheimer’s and other forms of dementia.

1. Educate yourself and family members, friends and neighbors about the disease. As the most common form of dementia, much is written about Alzheimer’s, but there’s also plenty of information available on Lewy-Body (2nd most common form of dementia), frontal temporal and vascular dementia as well as Huntington’s and Parkinson’s diseases. “It truly takes a village, and we all have to help each other with this terrible disease,” said Sewell, a geriatric psychiatrist at the UCSD Medical Center.

2. Put together a full support team. This should include professionals such as health care providers, pharmacists, eldercare lawyers and close friends and family that you trust and can count on. It also should include a caregiver support group. “The benefits of being in a support group are endless,” the doctor said.

3. Register your loved one in a Safe Return program. This national program – which our Glenner Centers participate in – includes registering someone with dementia into a database and can also include wearing a special ID bracelet or tags in the event they wander from home and get lost. Local authorities will be alerted to start a comprehensive search quickly.

4. Renovate your home. If you plan to keep a spouse or parent in your home, you’ll likely need to make adjustments for safety.

5. Make sure out-of-town family visits. Conflicts often arise when brothers or sisters who live far away question the validity or extent of a parents’ illness because they spend such limited time with them, usually on a telephone. Make sure they visit Mom and Dad for at least a few days so they can observe behaviors and then help make more informed plans for future care.

We had a great turnout for this morning’s session, “A Caregiver’s Road Map for the Alzheimer’s Journey,” held at the Ramada Inn in Kearny Mesa. Come back next week when we’ll tackle Medicare and MediCal options, estate planning and how best to transition from living at home to living at a facility.

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