Turning Away: How Misperceptions Hurt Dementia Caregivers

Caregivers are often the unsung heroes in dementia care. The mental, physical, and emotional toll of caregiving is immense, but when family and friends accuse, misinterpret intentions, or turn away from caregivers, the pain can cut deep.  

Dementia is a progressive condition affecting memory, behavior, and personality. Many people don’t understand the complexities and nuances of the disease. This lack of knowledge and understanding can lead to unfair assumptions about a caregiver’s choices, responses, and even the behavior of the individual with dementia. This can make it difficult for families who are caring for loved ones with Alzheimer's or other forms of dementia.

Families and friends not involved in daily care often make unfair assumptions about the caregiver’s choices or responses. Those who are not around may not recognize, experience, or accept behavioral changes, such as anger, paranoia, or aggression, that can take place in an individual with dementia.

The emotional landscape of dementia is challenging. And many dementia caregivers have to deal with isolation, social rejection, and the judgment that comes with the stigma of a dementia diagnosis. Caregivers are often unfairly seen as controlling, overreacting, or unsupportive.

Mary’s Story: Living with Stigma and Betrayal as a Dementia Caregiver

In an emotional and powerful episode of “The Disappearing Mind” podcast, Dawn Platt introduces Mary, a devoted and loving daughter who, alongside her father, cared for her mother who was diagnosed with vascular dementia. Her mother, a successful businesswoman who was adored by her family and a host of friends, began showing signs of cognitive decline after a stroke.

Mary discovered her mother was experiencing cognitive decline via medical records she obtained after her mom spent time in a psychiatric hospital after exhibiting concerning behaviors toward medical professionals. Her mother’s denial about her condition prevented her from receiving a formal diagnosis and treatment plan, making it difficult for Mary and her father to manage and navigate her dementia.

To make matters worse, her mother was adept at hiding her symptoms from family and friends, many of whom lived far away, hadn’t seen her in years, and were not around to witness the changes in her personality and behavior. When Mary tried to discuss her mother’s condition, she was met with suspicion, anger, and accusations rather than understanding and support from the people she once trusted.

The Emotional Toll of Betrayal

Mary’s mother began telling others, including social workers and police, that Mary and her father were stealing from her and abusing her. Fortunately, law enforcement and social workers were trained in dementia, recognized the signs, and were empathetic to Mary and her father.

But the damage was done, and the stress was taking a toll. Many long-time family and friends believed the accusations, leaving Mary and her father feeling vulnerable, scared, isolated, and deeply hurt.

Unfortunately, Mary’s experience is not unique. It’s common for people to turn against caregivers because of denial, discomfort, and misinformation about the disease. Many families sacrifice their time, money, and peace of mind caring for a loved one with dementia, only to be met with judgment, condemnation, and unsolicited advice.,

Mary recalled how frustrating it felt to be spoken to like a child by people she had known her whole life. She was frequently told to “just show more compassion,” “be more empathetic,” or “show more love” without understanding the daily struggles of caring for her mother. She understood people were concerned about her mother, but she wished more had taken the time to simply ask what was going on.

In addition to the emotional weight of being accused and doubted, Mary and her father had to continue to provide care and make decisions for her mother.

Finding Strength and Moving on

Despite the pain, Mary appreciated the few friends and family members of her mother who took the time to find out what was going on. Their support was invaluable to Mary and her father. Fortunately, Mary and her father were always very close, and they leaned on one another to navigate her mother's dementia.

Although Mary and her father struggled with the uncertainty of how people would receive them, all the way up to her mother’s funeral, they knew they had done their best, and in the end, everyone showed up and was very kind.

Advice for Family Caregivers in Similar Situations

Mary sympathizes with other caregivers and offers the following advice:

• Seek therapy: A professional therapist can provide a different perspective, emotional support, and a sympathetic ear.
• Find a support system: Reach out to those who support you and move on from those who don’t. It doesn’t help to argue and fight. Accept that some people are just not going to understand.
• Make Peace: When the time is right, explain what has been happening. After her mother passed away, Mary reached out to the people who misunderstood and explained to them what had been going on. Many apologized, which gave her peace, validation, and helped her move on.

Wrap-up

Mary’s story is a reminder that misunderstandings, limited communication, and a lack of empathy can make the already challenging role of caregiving for a loved one with dementia even more difficult for families.

Caregivers are often physically, mentally, and emotionally overwhelmed. They deserve respect, support, and understanding from their families and friends. If you’re caring for a loved one with dementia, get help from a support group or other dementia caregivers.

If you know someone caring for a loved one with dementia, reach out, ask questions, and offer help and support. Listen without judgment and take the time to educate yourself about dementia if you're confused. Offer to help, even if only for a short time. Caregivers need understanding, support, and help, not judgment and accusations.