Shared by Beth Soltzberg
The number of people living with Alzheimer's disease and related disorders is growing rapidly. JF&CS supports individuals and families who are directly affected by dementia, including a support group for adult children whose parents have Alzheimer's or dementia. Beth Soltzberg, LCSW, MBA, runs these programs. Her work includes facilitating caregiver support and education groups and designing new offerings for families. We asked Beth to share information she often discusses with adult children whose parent has dementia.
What is the emotional impact of a parent's dementia?
Often there is both a direct impact and a subtle impact. The direct impact is stress. It comes from many new decisions to make, family conflict about "who decides," financial strain due to missed work and care expenses, frustration about perplexing symptoms, and worry about the parent's well-being.
The subtle impact is just as important. A person living with dementia is very much alive and needs the same things that we all do – human interaction, meaningful pursuits, comfort, and fun. However, their relationship with family members has changed. And it will continue to change as their cognition changes. For an adult child, this may mean losing a witness to their childhood and their adult development. It may mean losing a parent's help, support, and encouragement. Even when the parent is in a good environment and enjoying life, this does not eliminate the adult child's need to grieve these losses.
What is it like for those who were never close to their parent?
The reality is that some parent-child relationships were warm and positive and some were conflicted. Some were neglectful or abusive, in which case the adult child may need to set limits on their current involvement. No matter the starting point, dementia changes a relationship. Sometimes a parent with dementia forgets long-term judgments they'd made of their child and the relationship gets easier. The important thing is to acknowledge that we aren't the Brady Bunch, and we can be honest about emotions and expectations.
Do siblings tend to work together when a parent develops dementia?
A recent study found that in 43% of families one sibling does most of the care. Most Balancing Act participants are their family's designated caregiver. Many feel resentment, especially when less involved siblings "backseat drive" by offering critiques but not meaningful help. Over time many designated caregivers rise to the difficult and critical challenge of defining what they are willing and not willing to do and asking siblings for specific meaningful help. They may decide to bring in professional assistance, such as a day program, home health aide, and/or a care manager, because it is simply not possible to provide all of the care alone. Truly, this does take a village.
Balancing Act, a group for adults whose parent or parents are living with dementia, is one of the core offerings of Alzheimer's/Related Disorders Family Support at JF&CS. Tell us about the group's name.
My co-facilitator, Joanne Peskowitz, and I named it to reflect our participants' reality. Most are balancing support for their parent or parents, care for children or other family members, a job, and all of the other responsibilities of "sandwich generation" life. And somewhere in the mix, they need to find a way to keep themselves healthy. No easy task!
You mentioned that adults caring for a parent need to find a way to keep themselves healthy. What are some tips?
Coming to a group like Balancing Act can help. Going to a Memory Café, a welcoming place for people with dementia and for their family and friends, or another fun activity with a parent can help the relationship continue beyond health care and dealing with problems. It's also important to recognize that stepping up and responding to a parent's needs is an act of valor and integrity. This valor is not diminished by the inevitable ways that things will go wrong or the healthy limits that a person must set based on their relationship with their parent and their own human limitations. Psychologists Christopher Germer and Kristen Neff have found that most people are more forgiving and compassionate to others than to themselves. This is the time to notice this tendency, and begin to alter it. It's critical if caregiving will be sustainable. At every session of Balancing Act, we encourage participants to include themselves in the list of people in their life whose well-being matters and needs attention.
For more information about Balancing Act, contact Beth Soltzberg at firstname.lastname@example.org or 781-693-5628.
Beth Soltzberg, LCSW, MBA, manages the Alzheimer's/Related Disorders Family Support program and works as a coordinator with the Parkinson's Family Support Program. These programs of Jewish Family & Children's Service encompass support, education, and the arts.Beth's work includes facilitating caregiver support and education groups, and designing new offerings for families affected by Alzheimer's disease and other dementias. Beth earned her MSW and MBA from the University of Chicago and a certificate in end-of-life care from the Smith College School of Social Work. She holds an advanced credential in hospice and palliative care social work.