Family Conflict Series: The Backseat Caregiver

Caring for a loved one with dementia requires significant time, energy, and patience. Caregivers are responsible for scheduling doctors’ appointments, managing medications, handling daily caregiving duties, and complex behavioral changes, all while managing their own households.

It’s not uncommon for caregivers to neglect their own health and well-being to take care of a loved one with Alzheimer’s disease or other forms of dementia. Family caregiving is often unpaid and with limited resources. According to the Alzheimer’s Association, the top five stresses for family caregivers include the cost of care, coordinating with multiple doctors, securing appointments, and finding time for themselves.

In addition to all their responsibilities, many caregivers face challenges from opinionated family members who provide little support, making the caregiving process even more difficult.

So, what should a caregiver do when a family member is not involved with daily caregiving but still offers negative opinions, complaints, constant questions, or criticisms?

In this article, we’ll explore why uninvolved family members may interfere with caregiving and provide tips for navigating this common family conflict.

Why Do Uninvolved Family Members Interfere?

Family dynamics can be complex, and a dementia diagnosis can further complicate them. In addition to watching a loved one struggle with a progressive disease, families have to work together to ensure their loved one receives proper care.

Sometimes, family members who are not directly involved in the day-to-day caregiving can unintentionally add stress to an already challenging situation by offering unsolicited opinions and complaints about the care being provided. These family members may be unaware of how much their behavior impacts both the caregiver and their loved one.

Here are some common reasons this behavior may occur:

Guilt & Denial

Guilt and denial often lead to uncooperative behavior. A difficult family member may feel guilty, whether consciously or unconsciously, for not being more available to help. Instead of addressing these feelings or coming up with solutions, they may criticize the caregiver, rather than admit they’re not doing their part.

Distance

Family members who live long distances or only visit on occasion have a false sense of the realities of taking care of someone with dementia. They only see brief glimpses of the person with dementia, which can lead them to believe that things are not as bad as they’re being told. They’re not witnessing the nightly wandering, incontinence issues, behavioral changes, or other symptoms related to dementia.

Control Issues

The difficult family member may be the oldest sibling, the matriarch or patriarch, and they’re accustomed to being the authority figure of the family. Not being in control or being unable to make crucial decisions can cause them to criticize, even if they don’t live nearby or are unable to help.

Unresolved Childhood Dynamics

Unresolved or ongoing family childhood dynamics, such as sibling rivalries, favoritism, and grudges, can manifest later in life when families are navigating the stressful and challenging journey of caring for a parent with dementia.

Fear

Alzheimer’s disease and other forms of dementia are complex progressive conditions that impact a person’s memory, thinking, and behavior. When a loved one receives a dementia diagnosis, it can be devastating for families, as they watch the gradual decline in memory and abilities. The fear of change and the potential loss of a parent can lead to challenging behaviors among some family members.

Family members may resist necessary changes, such as transitioning to memory care or medication adjustments, because these changes force them to accept their loved one’s decline. This fear can turn into anger, control, and frustration as they struggle to come to terms with their loved one's decline.

How Do You Handle These Situations?

Caring for a loved one while dealing with the opinions of an involved family member can be overwhelming and frustrating for caregivers.

However, there are effective strategies to manage these situations without losing your temper, making the situation worse, feeling defeated, or causing a major family argument.

Set Boundaries

When caring for a person with dementia, it’s crucial to prioritize the individual over everyone else. Challenging discussions with family members can affect your ability to care for yourself and your loved one.

Establishing the following boundaries can be helpful:

• Limit emotional discussions over the phone
• Avoid arguing
• Focus on the facts
• Don’t discuss every detail about caring for the individual, because they may not be able to handle all of the information

If a family member continues to cause problems, use statements like, “I appreciate your concern, but unless you are here every day, you’re not seeing the full picture.” If they continue to argue, let them know you won’t engage, but if they would like to help, you can discuss real solutions.

Invite Them to Help More

When a family member begins to criticize, ask them to take on more responsibility and admit that you need help. Tell them if they’re so concerned about their loved one's care, they’re welcome to take them to their next doctor’s appointment or take over for a week or a weekend.

Putting oneself in another person's shoes can quickly change the scenario. If they refuse, remind them they have no say if they don’t participate in care.

Involve a Third Party

When all else fails, a professional may be able to help. Enlist help from a physician, care manager, or dementia coach. Ask them to explain the situation; sometimes hearing the opinion or advice from an expert can diffuse family conflicts.

Wrap-up

Caring for a family member with dementia can be challenging, especially when dealing with difficult family members. These individuals can negatively impact the physical, mental, and emotional health of both the caregiver and the person living with dementia. It’s crucial for caregivers to protect their own health and well-being.

Focus on your loved one rather than the opinions of uninvolved family members; you don’t need their approval for every decision you make. Take the time to explore available options and make the best choices for yourself and your loved one.

If constant negativity from family members is affecting your health, ask yourself the following three questions:

1. Does the family member offer genuine support?
2. Are they causing you stress without providing any viable solutions?
3. Are you sacrificing your well-being to keep them happy?

If the answer to these questions raises concerns, it may be best to limit your engagement with that individual.

To learn more, listen to the “Family Conflicts Series Episode 2: The Backseat Caregiver” episode of The Disappearing Mind, an award-winning podcast hosted by National Dementia Coach Dawn Platt that helps listeners navigate along their personal journey with dementia through exclusive and direct perspectives of people diagnosed with the disease, their caregivers and experts in the field.