(Editor’s note: This article is part of an editorial partnership between Next Avenue and the Benjamin Rose Institute on Aging, a Cleveland-based nonprofit whose mission is to advance support for older adults and caregivers.)

Receiving a diagnosis of early stage dementia can fill a person and that person’s loved ones with fear and anxiety about what the future holds.

Yet, dementia can progress slowly over years, giving people and their families and friends plenty of time to plan for the future together.

In too many cases, however, that is simply not happening, says Silvia Orsulic-Jeras, a senior research analyst at the Benjamin Rose Institute on Aging in Cleveland.

“Care planning is similar to other activities people know they should be doing, such as exercising or eating healthy, but sometimes don’t do or put off for a variety of reasons. People tend to wait until something happens, until there is a crisis, to take action,” says Orsulic-Jeras, who is program manager for the institute’s SHARE (Support, Health, Activities, Resources and Education) program.

SHARE educates people with early stage dementia and their families about dementia and helps them plan for the kind of care and support they will need.

Stigma and Assumptions About Early Stage Dementia

When it comes to dementia, other factors also are at play. The diagnosis can be stigmatizing, says Carol Whitlatch, a senior research scientist at Benjamin Rose and assistant director of its Center for Research and Education. She says shame and embarrassment often keep individuals with dementia and their families from openly discussing the disease and planning for future needs.

There’s also an assumption — on the part of family members and caregivers — that the individual living with the disease either can’t, or doesn’t want to, take part in making decisions about their care.

“In the early stages especially, people are often fully aware of the meaning of their diagnosis and able to communicate care choices and preferences.”

In her 35 years of research in dementia care planning, Whitlatch has found that assumption is wrong.

“In the early stages especially, people are often fully aware of the meaning of their diagnosis and able to communicate care choices and preferences,” she says. “And they not only want to be actively involved in making decisions about future care, they also place a high level of importance on not being a burden and being as helpful to their family caregivers as possible.”

Whitlatch’s research has shown repeatedly that individuals in the early and moderate stages of dementia are able to participate in their own care plans and can clearly state their preferences for how care is provided. This includes their care values, such as independence, not being a burden and spending time with family.

A Voice in Their Own Care

During SHARE sessions, developed through Whitlatch’s research, the person with dementia and the person’s caregiver work collaboratively with a trained counselor to develop a plan of care for the future.

Whitlatch says this proactive approach empowers people with dementia by giving them a voice in planning their care. It also provides them with unique insight into the depth and breadth of the daily care needs that their caregiver will someday face. This often compels the individual with dementia to more carefully consider where alternative sources of care might lessen the caregiver strain.

“Without knowing what it is [the person with dementia] would have wanted, these decisions end up being made in crisis situations rather in a planful, supportive way that includes discussion and collaborative planning,” Orsulic-Jeras adds.

Care Planning for Any Older Adult

While SHARE was developed for use by trained counselors, there are several takeaways from the program that can be valuable to older adults when planning for long-term care. Here are suggestions from Orsulic-Jeras:

• Start the dialogue early: Knowing that any person could someday face a mental health or physical health crisis, it’s important to talk openly with spouses or partners, children and other loved ones about what you want for your care and living situation in the years to come.
• Get into the nitty-gritty: When people do discuss care preferences, they tend to focus on the big things, like end-of-life directives. But there are other daily care issues — such as house cleaning, shopping, transportation, bathing, dressing and toileting — that need to be addressed in any effective long-term care plan.
• Learn how to ask for help: “Asking for help is one of the biggest barriers for successful independent living among aging adults, especially with a diagnosis of Alzheimer’s or other related dementia where people often feel stigmatized and isolated,” Orsulic-Jeras says. Start getting comfortable with asking for help now, while the requests are manageable and more easily accommodated.
• Consider paid sources of support: Older adults generally tap loved ones for their care needs, but community-based services — such as for cleaning, meal preparation, home care and on-site adult day services — are a great supplement to friends and family caregivers.

“Whatever you and your loved ones decide, it is critical that you have a plan that you can rely on when the medical need arises,” Orsulic-Jeras says, adding that hurried, reactive decision making often leads to less-than-ideal circumstances. “It also often results in poorer quality of care than if care partners had discussed and documented their plan and preferences ahead of time.”