How to Help When Clients Confront a Dementia Diagnosis

On average, the journey from early Alzheimer’s symptoms to death spans 12 years, and many patients require 24/7 supervision and care. The scope of that journey elevates the importance of pre-planning to help even wealthy families navigate it with some degree of confidence.

Starting the Caregiving Conversation

Advisors and loved ones are often able to notice a change in a person well before a formal dementia diagnosis, Kruger pointed out. This opens up a window to put the basic elements of a care and financial plan in place while the affected individual remains able to participate in the discussions.

In addition to setting up a power of attorney, other legal instruments can be used to help the family manage affairs. These include guardianship or conservatorship, last testaments, wills and trusts, and advance health care directives — all designed to protect individuals and their assets. 

Even before any signs of illness, Kruger recommended, adult children can try to spark planning conversations with their parents. It’s not easy to get people to talk openly about their mortality, but simply waiting until a negative health event is not a recipe for “positive” outcomes.

One strategy to start the conversation, Kruger said, is asking leading questions about empowering people who could be facing disease — rather than emphasizing a future loss of capacity and control.

“For example, you could ask something like, ‘Mom or dad, is it important for you to have a say in what happens to you as you age?’” Kruger suggested. “Another question might be, ‘Is it important for you to be as independent as possible as you age?’ Again, it’s about empowering people more than putting the focus on their potential incapacity.”

The vast majority of people who come to her consulting firm for help are already in “full-blown crisis mode," she noted, with heightened stress and negative emotions.

“So, for financial advisors, it really is an opportunity for you to be that circuit breaker and do whatever you can to get your client families to talk about this stuff as openly and early as possible,” Kruger said.

Balancing the Burden

Another important reason to kick-start planning conversations earlier is that it gives parents, children and other kin time to assess and communicate their own caregiving capacity.

In a perfect world, Kruger said, children and other family members could agree to equal divisions of the physical and financial caregiving load. In practice, this rarely happens.

“When there isn't already a plan in place, the sad reality is that there’s often just one or two people who are forced to take up the entire burden — more often than not an eldest daughter,” Kruger said. “This causes a tremendous amount of stress and potential resentment, and it can interfere with the next generation's careers and retirement planning.”

Wealthier families can use their financial resources to source additional support. That helps, Kruger said, but the burden remains when only one or two members of the family are put into a lead caregiver role.

Tips From Experienced Caregivers

Aligning the caregiver group is a crucial step, Kruger said, but it’s not the only challenge to consider. Often, aging parents have trouble taking big steps that could make the lives of their children and grandchildren easier — for example, moving from a long-time private home into a care facility.

One strategy she has seen work is to make the move in phases. Assuming that a family has the financial means, it can be far less of an emotional burden to have the aging person move into a facility while still owning their home. Shortly afterward, they could sell the home once they are settled into their new routine.

“That’s often all it takes for people to let go of their home — a sense of belonging and a new routine,” Kruger said. “It seems like a little thing, but what we generally see is that it takes between 30 and 60 days for people to start to feel at home in a new location.”

For adult children worried about the level of care their parent may receive in a care facility, Kruger said, setting up cameras in their private room is a good option. The vast majority of states permit this, she noted, but it’s important to review local rules and regulations.

While it may seem like an invasion of privacy, parents don’t generally object to the idea of someone else keeping an eye on them. And the reality is that many people with significant Alzheimer’s or dementia symptoms don’t have the capacity to remember or care about the cameras entrusted by their children, Kruger noted.

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