Advanced Planning for People With Dementia

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Like most other states in the U.S., the diminutive state of Delaware is facing a groundswell in its older population, which carries with it a growth in the demand for specialized senior services. There are currently around 17,000 Delawareans 65 and older living with Alzheimer’s disease or related dementia — a number projected to burgeon to 23,000 by the year 2025, an increase of more than 35 percent.

Helping Delaware gear up to meet the current demand and brace for the future strain on its system of supports and services for people with dementia, the Administration for Community Living recently awarded $898,324 to fund the state’s Alzheimer’s Disease Initiative, hoped to serve as a model for similar programs in other states.

While Delaware’s initiative has several components, including training caregivers and issuing vouchers for respite care, its primary focus will be on improving legal services.

According to Patricia Justice, attorney with the Delaware Division of Services for Aging and Adults With Physical Disabilities, legal services were seen as the biggest unmet need for the population. “Many people, particularly seniors, simply can’t afford to hire an attorney,” she says, quickly noting the reality that most attorneys are simply not well versed in dealing with the unique needs of people with dementia, anyway. Without specific training or a seasoned mentor to lead the way, many are effectively using their clients as guinea pigs. Lawyers surveyed were particularly ill-informed about the intricacies of Medicaid, called Medi-Cal in California.

To right this wrong, Delaware’s program included an intensive training for attorneys on the diagnoses and treatments of dementia, how to assess clients’ mental capacities, and local services available to help people with dementia and their caregivers. Those who completed it were deemed “dementia-friendly attorneys.”

Planners and participants in the training agreed that the most meaningful presentation was the portion by a man diagnosed with early onset Alzheimer’s disease and his wife, who talked about their personal experiences with legal planning and with living with the disease.

On the receiving end of the new knowledge gained through the training in Delaware’s initiative are those who participate in the initiative’s legal voucher program. All Delawareans diagnosed with Alzheimer’s disease or related dementia are eligible to receive one of the vouchers worth $275, which covers about a hour of a lawyer’s time to assist in planning future legal needs.

The Importance of Legal Planning

Justice adds that beyond poorly trained legal providers, additional barriers to focusing on future planning needs include denial that dementia exists and family dynamics in which two or more people are jockeying for control.

If it’s possible to plan ahead, however, the benefits are more than worth the effort. The umbrella term “legal planning” typically includes:

  • Estate planning options — such as wills, trusts, and Medicaid applications, and
  • Decisionmaking options — including advance healthcare directives, powers of attorney, and guardianships.

Many people with diminished mental capacity are still able to make decisions and finalize legal documents of various types.

But early planning, optimally before the dementia progresses very far, helps assure autonomy and peace of mind by giving the person affected the best chance to participate in making legal decisions likely to have a profound effect on his or her life. It can also help curb stress among family members by making an individual’s wishes specific and concrete. And importantly, it can help guard against future elder abuse and financial exploitation of people who have dementia — the most frequent targets of undue influence.

An unexpected boost, according to Justice: Planning can also help connect people with dementia and their caregivers to other local resources that may help them cope with everything from future care options to the intricacies of paying for them.

New Guides Help Lead the Way

The National Dementia Resource Center is also focused on the need for people with dementia and their families to do as much advance legal planning as possible. To that end, it recently published a series of consumer guides, Living With Dementia, specifically targeted to individuals in the early stages of dementia.

The four guides were created with thoughtfulness and attention to detail, with each covering a unique planning topic to keep them to manageable lengths. And to keep the text accessible for people with dementia, they are written in plain language, at a 7th or 8th grade reading level, and designed with lots of white space, large fonts, and vivid color contrast.

The Living With Dementia guides, which are free to download, cover:

  • Financial Planning (PDF) — helping individuals plan how to manage their money and property
  • Health Care Planning (PDF) — covering how to have ongoing conversations with health care providers, as well as considerations for naming agents to make decisions about care if a person is no longer able to do so
  • Care Planning (PDF) — discussing the potential needs for increased care over time, as well as how to pay for it, and
  • Making Decisions for Someone With Dementia (PDF) — covering both health and financial decisions, and the only guide written for the audience of family members as opposed to the person with dementia.

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