What Nancy Reagan Taught Us About Planning After Alzheimer’s

Adam Beck

March 30, 2016

The disease has often been called “The Long Goodbye,” and it was likely not the goodbye that President Reagan envisioned for his post-presidency, the closest thing presidents get to a retirement. Here, I recount a panel discussion during Alzheimer’s Awareness Month that examined the impact of an Alzheimer’s diagnosis on the retirement plan.

The passing earlier of this month of former First Lady Nancy Reagan brought fond remembrances, especially of how she supported and protected her late husband during his battle with Alzheimer’s Disease. The disease has often been called “the Long Goodbye,” and it was likely not the goodbye that President Reagan envisioned for his post-presidency, the closest thing presidents get to a retirement. When he released a letter to the American people on November 4, 1994 to announce he had Alzheimer’s, it was a landmark moment for this disease, at least in our national discourse.

It was Reagan himself who declared the first Alzheimer’s Awareness Month in November 1983, likely not anticipating that his own retirement would be completely altered by this disease. Last year, during Alzheimer’s Awareness Month, I was curious what regular folks, such as the more than five million Americans living with Alzheimer’s, do when an Alzheimer’s Disease diagnosis alters their retirement plan. I spoke with Dr. Valerie Cotter, Director of the Adult-Gerontology Primary Care Nurse Practitioner Program at the University of Pennsylvania School of Nursing, Bruce Sham, a special care planner with the First Financial Group in Bala Cynwyd, Pennsylvania and Mark Freeman, Esq., an elder law attorney who specializes in nursing home issues.

The conversation was quite revealing. The disease impacts not only those who are living with it, but perhaps even more their caregivers – which number 15 million in the United States alone. We think a lot about the impact on family dynamics, living arrangements, and decision-making, but can often overlook that this disease strikes during the prime of one’s retirement years. Decades of careful planning can be turned upside-down upon learning of a diagnosis. But like with any retirement, planning with a team of professionals will make the experience less stressful and mitigate harm to the family and finances.

Retirement advisers need to incorporate a dementia contingency into the retirement plan and be prepared to work with clients on strategies after a diagnosis. The problem is only going to get worse. Dr. Cotter noted that Alzheimer’s is “one of the most common medical diagnoses we see with older adults,” and that because “age is the significant risk factor for dementia, as the population grows older, we’re going to be seeing many more people with dementia.” It goes beyond planning for retirement itself and extends into the estate plan, or what Attorney Freeman calls “crisis estate planning.” In other words, when someone loses the ability to make cogent decisions about gifting assets or leaving a will, significant changes need to be made, and often made quickly before assets are depleted.

One of the common themes in our panel discussion was part of what complicates altering the retirement plan after an Alzheimer’s diagnosis is that these are difficult decisions that follow uncomfortable conversations. But critical conversations and necessary decisions they are, nonetheless. Nancy Reagan was a national model of stoic support for a spouse living with Alzheimer’s and hopefully a key part of her life’s legacy will be that more Americans will know of a diagnosis as early as possible and have the courage to engage in a conversation about how to change a retirement plan that is now a Long Goodbye. And then hopefully very soon, science will make those conversations unnecessary.

You can read more about the above-referenced panel discussion and watch the video here.