Navigating dementia and family expectations

By Robert Miller  | June 1, 2022

While dementia affects people differently, there are common milestones. Knowing them may help families prepare for each step.

Start with acceptance

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.

It can be difficult to accept that a loved one may be showing signs of a decline. Find the courage to have conversations with your family early in the process. 

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 a plan B. And don’t wait to consult with medical experts or look for care options that fit your needs.

Expect to put someone in charge

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. 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, a financial advisor, physicians, estate attorney and others.

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 make tough choices.

Honest conversations

When families begin looking for full-time care options for a parent or grandparent, this is inevitably a stressful time for everyone involved.

This is also a time to face difficult truths, including the current reality that the journey of decline will continue for your loved one. 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 do you want the next few months or years to look like for your family?”

It’s also important to set aside unhealthy expectations. 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. Focus 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. 

Choosing full-time care can also mean protecting the safety, health and well-being of others in the family, especially the primary caregiver.

Build relationships and partnerships

When it’s time to move your loved one to full-time care, be prepared to see 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.

Professional caregivers can’t know everything that you know. They need you to be the expert for your family to educate them about your mom or dad. In turn, be prepared to recognize professional caregivers for the professionals they are. Allow them to be the experts about how the disease will stage and how 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. 

Finally, expect and accept that one day the journey will come to an end. Caring for my grandmother during her last eight years taught me amazing things — about her and about myself. 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.

Robert Miller is a licensed social worker and senior vice president of company development for Comfort Care Homes.