News Life Sciences Proactive Alzheimer’s planning and care
Proactive Alzheimer’s planning and care
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By Karen Gentry | LabWork
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WEST MICH. and WASHINGTON, D.C. — The devastating diagnosis of Alzheimer’s brings about numerous challenges and the need for life-changing decisions.
Leslie Fried, a senior attorney with the American Bar Association and director of the Alzheimer’s Association Medicare Advocacy Project, spoke to a group of journalists in Washington, D.C. on the topic of “After the Diagnosis.” She told the group that there are 11 million caregivers to individuals with Alzheimer’s including 200,000 under the age of 18.
Alzheimer’s is the sixth leading cause of death in the country.
Getting a person’s affairs in order is crucial after the diagnosis. Decisions must be made about how to pay for healthcare and who will manage and make decisions on behalf of the patients. Fried said decisions need to be made about who will manage the money and plans need to be made for the care of any dependents.
Individuals with a diagnosis of Alzheimer’s may lose their employment and applying for disability through Social Security can take as long as 12 months.
“With Alzheimer’s, it’s a struggle getting benefits,” Fried said. “There’s often a period when people don’t have income, creating a lack of financial security.”
Fried noted individuals with Alzheimer’s may have been misdiagnosed for a couple of years and she noted there is now a “new process for getting them on Social Security faster.” Fried said Medicare is typically the primary payer for healthcare, but there is a 24-month waiting period.
After the diagnosis a plan should be made to manage money and property. Appointing someone as power of attorney cuts costs and avoids guardianships, although there are well documented cases of abuse by powers of attorney. To avoid family conflicts, Fried said it is “really important to get everything in writing.” Guardianship should be avoided because it is set up by a court, is an expensive process and results in a dramatic loss of rights. Fried said guardianships are usually very broad and hard to monitor by the courts.
Fried said Health Care Advance Directives have been around since the 1970s and said there are two types of living wills. As part of a growing trend, 12 states have adopted Physician Orders for Life Sustaining Treatment (POLST), very specific information not as broad as advance directives. The POLST is a portable physician order summarizing their wishes regarding end-of-life treatment including wishes for resuscitation, medical interventions, antibiotics and artificial feedings.
A person’s healthcare advocate should be aware of quality of life issues and what’s important to the patients. Fried told about one elderly person who spoke about his love for chocolate ice cream and Sunday night football. When he could no longer enjoy those two favorite things, possibly no extreme measures should be taken to extend that person’s life.
Jennifer Van Regenmorter, an attorney with Foster Swift Collins & Smith PC in Holland, knows first-hand the consequences of not planning ahead.
“When a physician deems them incapacitated and they do not have a power of attorney in place, you need to go to court and have a guardian appointed on their behalf,” Van Regenmorter told LabWork. “You don’t want that to happen.”
Van Regenmorter recommends making a list of assets for an attorney to review as well as the names of trusted advisors so families or agents know who these advisors are. Married couples may also want to look at how assets may be preserved for the spouse if the spouse with Alzheimer’s may need long-term care or to qualify for Medicaid.
“Different asset preservation strategies should be reviewed with an attorney,” Van Regenmorter said. “You want to meet with the attorney while they still have the capacity to implement changes to their health plan.”
She advises persons of faith to seek out religious, spiritual advisors or chaplains, many of whom have ways to make religious traditions and sacraments meaningful to people with Alzheimer’s.
Business owners need to review their business plan and ensure that they have a succession plan in place for the business. Corporations need to review any stock purchase agreements and limited liability companies need to review operating agreements.
“Those documents typically have disability paragraphs in them, that state upon the shareholder’s or member’s disability, the company or other members may have the right to buy them out,” Van Regenmorter said.
She advises business leaders to look at the definition of “disability” in their documents. These provisions may eventually be invoked by diagnosis of the disease and may trigger a buyout of their stock or membership interest.
Van Regenmorter is confident the Baby Boomer generation will demand more options with regard to their care and there will be more care options available to them.
The Alzheimer’s Association Greater Michigan Chapter – West Michigan Region encompasses Kent, Ottawa, Ionia, Montcalm, Mecosta and Osceola counties and serves as an information broker for Alzheimer’s patients, caregivers and their families. Hundreds of people turned to the Alzheimer’s chapter for information on resources, assessments, community support groups and respite services. The Alzheimer’s Association mans a 24/7 helpline and coordinates a lot of educational programming on a range of topics from long term care facilities to educating employers.
Joy Spahn, regional director of the Alzheimer’s Association Greater Michigan Chapter-West Michigan Region said, “There’s more time lost for work taking care of aging parents than children, which is a shift,” noting the implications for employers.
The association offers a three-part educational series seven times a year with the first session focusing on medical aspects, the second session on elder law and issues related to financing long-term care and the third focusing on practical, hands-on information.
Howard Gleckman, a former Business Week reporter and author of “Caring for Our Parents: Inspiring Stories of Families Seeking New Solutions to America’s Most Urgent Health Crisis,” spoke to journalists in Washington, D.C. about the challenges of long-distance caregiving of Alzheimer’s patients. He said small group homes offer interesting options for people with dementia where the patients seem happier. The homes offer no processed food for healthier outcomes. He said about one half of caregivers are 50-64 year old adult daughters and one-third of Alzheimer’s patients need care for five years or more. Fifteen percent of caregivers provide 40 hours of care per week.
AttentiveCare is a new Internet-based system for those faced with long distance caregiving challenges. Videoconferencing offers a way to check on a loved one daily for those who want to continue to stay in their home for as long as possible. LW
