Dementia and Family Expectations: How to Navigate the Journey

In an ideal scenario, families have conversations earlier than the onset of illness. If you’ve noticed a loved one being forgetful, foggy, or behaving in unusual ways, it’s important not to dismiss those moments and be in denial about the potential for dementia or other health concerns.

“We understand it can be difficult to accept that a loved one may be showing signs of a decline,” says Miller. “Find the courage to have conversations with your family early in the process. You may not be able to change what is happening, but you can prepare yourself.”

Along the way, a person with Alzheimer’s disease may behave in ways that are unrecognizable, or a care plan in place one day may not work the next. For these reasons and more, it’s important for families to remain flexible. “Have a plan A and have a plan B,” says Miller. “And don’t wait to consult with medical experts or look for care options that fit your needs, sooner than later.”

All families can sometimes have complicated dynamics. Often, though, one person can be counted on to take charge of family matters when there is a reunion to plan, or a health crisis occurs. That person often becomes the primary family caregiver at the beginning of the journey.

“The primary caregiver is the one who steps in and provides part- or full-time care,” says Miller. “And, at some point, that person may become physically and emotionally stressed and worn out. Expect that there will come a point in the journey where personal care at home may no longer be best for the entire family. If you are the primary caregiver, be honest with yourself and your family about what you need and what you cannot do.”

At some point, expect to promote the primary family “caregiver” to a “care manager,” placing them in charge of a team that can reach beyond professional caregivers and include other family involved, a financial advisor, physicians, estate attorney, and others who need to be informed of developments and directed based on the wishes of your loved one.

The “care manager” is the person who can help build agreement within the family and team for next steps of needed care, speak for the family, and be honest about their own ability to make tough choices.

ComfortCare Homes meets many families when they begin looking for full-time care options for a parent or grandparent. Inevitably, this is a stressful time—for adult children, for a primary caregiver or spouse, and for the person with dementia.

Miller says this is also a time to face difficult truths, including the current reality that the journey of decline will continue for your loved one. “While treatment options are hopefully on the forefront, we can’t make the disease go away at this point. It’s time to ask, ‘What do you want the future to look like? What does caregiving look like? What matters the most? What do you want the next few months or years to look like for your family?’”

It’s also important to set aside unhealthy expectations, says Miller. “If you are choosing a particular dementia-care option because you’re trying to make the person with dementia happy, that may be a hope but not a realistic goal,” says Miller. “Focus first on what is best for the safety and care of everyone in the home.”

While difficult, choosing to place your loved one in full-time care can bring peace of mind that a loved one is getting the best care possible, which benefits everyone in the family. “If mom has dementia, she is getting a lot of attention. Meanwhile, has anyone looked at dad lately?” Miller says. Choosing full-time care can also mean protecting the safety, health, and well-being of others in the family, especially the primary caregiver.

When it’s time to move your loved one to full-time care, be prepared to see professional caregivers as partners on the journey. And, the more information shared between the family and professionals, the better the relationship. The concept of patient-centered care revolves around the idea that the more you know about someone the better you will naturally care for them.

“As professional caregivers, we can’t know everything that you know,” says Miller. “We need you to be the expert for your family to educate us about your mom or dad.”

In turn, be prepared to recognize professional caregivers for the professionals they are. “Allow us to be the expert about how the disease will stage and how we're going to best care for that situation.”

Sometimes probing questions can feel uncomfortable for families. Some people may feel as if they are being judged for the level of care provided so far, or they may feel guilty about passing off the care duties to professionals. “It’s important that you understand that at ComfortCare Homes we are an ally. We’re on your side,” says Miller.

Finally, expect and accept that one day the journey will come to an end. “My grandmother taught me amazing things in the process of caring for her—about her and about myself,” says Miller. “To me, ‘living the memory’ means that I miss her, and I love her. I have grief, but in celebrating her I have found joy in her continued presence in my life.”

ComfortCare Homes is dedicated to providing the highest level of personal care and engagement through all stages of Alzheimer’s and dementia—for residents and families. Adapting to frequent changes and understanding how to care for each individual at every level of capability is a hallmark of ComfortCare Homes. 

If you have questions about dementia or options for professional caregiving for your loved one, please call (316) 685-3322 for a confidential conversation or to schedule a free tour and consultation.