Estate planning for a loved one diagnosed with Alzheimer’s may seem like a straightforward process, but the often lengthy and confusing progression of the disease adds a level of complexity that requires a thoughtful and flexible approach that considers both the individual as well as family caregivers.

“Just like there are no two cases of Alzheimer's disease that are identical, there is no one single plan that can anticipate all of the potential changes that can occur as the disease progresses,” said Klea Harris, an estate planning attorney who has worked with the Alzheimer's Association of Utah to help educate families.

While there’s no one single best course of action for estate and care planning, Harris offers several examples of “dos and don’ts” based on her experience of seeing good choices – and not-so-good choices – made by families she’s represented.

1. Create a “living care” plan – This isn’t about legal authority. It’s about preserving identity.

• Harris noted that she asked a client about her favorite breakfast, her favorite supplements, her favorite music, her birthday traditions, her religious practices, whether she’d want sacrament visits, and what television shows she loved. “I learned she loved Big Joe’s Polka Show,” Harris said. “We actually had to change cable providers at one point so she could keep watching it. I learned that if she didn’t have pecan pie on her birthday, it wasn’t really her birthday. These details matter. They preserve dignity. They help future caregivers understand the person, not just the diagnosis.”

2. Plan for caregiver fatigue – Harris believes this may be one of the most overlooked realities in dementia care.

• “Personally, I know at least a dozen caregivers who died before the person they were caring for,” she said. “This isn’t some abstract statistic to me. I’ve watched it happen. Families need backup plans because caregivers are vulnerable too. We often spend so much time planning for the person with dementia that we forget to plan for the person carrying the burden of care.”

3. Preserve the person before you preserve the estate – Beyond the property and wealth, arguably the key “possessions” that risk being lost from Alzheimer's disease are the stories and voices of those involved.

• “Life is made up of small moments, and once those opportunities are gone, they’re gone forever,” said Harris. “But when a client has completed a legacy interview, the difference is remarkable. One of the first things we miss when someone dies is their voice. To be able to hear it again, to see them laugh, to see their expressions, is an incredible gift. I especially love recording married couples together. Most of my clients have been married 40, 50, even 60 years. To watch them interact, tease each other, and express affection creates a beautiful gift for children and grandchildren. It’s a quiet message of hope about what love can look like over a lifetime.”

4. Don’t make major asset transfers during a crisis without qualified advice – A near-death experience for one of Harris’ clients led the person to override their will and immediately add children to the deed of the family home. While the individual survived the medical situation, the children exercised their property rights and questioned how their parent was spending money. Years of guardianship and conservatorship proceedings followed and the children, who would have ultimately inherited the family home and assets, spent considerable time and resources in court, which would not unwind the home title transfer.

5. Know that financial exploitation can happen within families – Harris offers the example of an individual who suffered a traumatic brain injury. Without the oversight of an independent advisor, some close family members executed new legal documents that changed authorized decision-makers and altered long-standing plans.

“A dementia diagnosis reminds us that time is limited,” said Harris. “While we cannot control the diagnosis, we can use the time we have to preserve memories, strengthen relationships, and create systems that support dignity, safety, and peace. These are a few of the considerations that become incredibly important once a dementia diagnosis enters the picture.”

There are 38,300 Utahns among 7.4 million Americans living with Alzheimer’s disease, according to the Alzheimer’s Association. Another 118,000 Utahns provided an estimated 150 million hours of unpaid care for loved ones last year valued at nearly $3.4 billion.

“Knowing that nearly 80% of people living with Alzheimer’s are cared for at home, it’s incredibly important that families not only recognize the warning signs of the disease but also understand how to plan thoughtfully for what lies ahead,” said Lisa Phinney, executive director of the Alzheimer's Association of Utah. “With the right planning and support, families can preserve dignity, reduce conflict, and protect what matters most. The Alzheimer’s Association is here to help families navigate these decisions with clarity, confidence, and compassion.”

To learn more about the information, programs and services provided at no charge by the Alzheimer's Association, go to alz.org or call the Association’s free Helpline, staffed 24/7 by trained professionals, at 800-272-3900.