This month’s dementia care article is guest-authored by our colleague Karen Dworski, LCSW. Thank you Karen for sharing your insights, and by supporting our shared communities.
Mediation for Families Facing Dementia
by Karen Dworski, L.C.S.W., ElderPath Consultant and Mediator
Few people are prepared to hear that their mother, father, brother, or sister has been diagnosed with a dementia (now called a Neurocognitive Disorder). Just like the grief process described by Dr. Elizabeth Kubler-Ross in her work on the five stages of grief, family members of a loved one with a Neurocognitive Disorder go through a similar grieving process: denial, anger, guilt,sadness and acceptance.* Often families struggle with the denial stage, such as when a family member, say a daughter in California, is in contact with her Connecticut sister who is managing care for their mother who has been diagnosed with Alzheimer’s disease. So often I hear that the California daughter says, “Mom’s fine! I talk with her every week and she makes sense, she knows who I am.” Or a son who is not a caregiver may struggle with his mother’s decision to place his dad in a memory care assisted living, struggling with his own guilt about not being available to give enough support to keep his dad home.
These are two of many scenarios that occur when family mediation can be very helpful in assisting families with the emotions and decisions related to caring for a loved one with a Neurocognitive Disorder (dementia). Often families benefit from sitting down with a dementia care specialist who can facilitate a discussion about care, covering such issues as:
what is each family member’s goal for care for that loved one with a Neurocognitive Disorder?
What is a realistic assessment of the loved one’s level of dementia and stage of the disease?
How to help a family understand the level of functioning and explore the options, develop different plans of care that meet the needs of the loved ones in a way that basically satisfies the family- finding the right path for elder care.
How to have this discussion and bring family to the same page, preserving family connections and relationships
As a social worker and therapist specializing in geriatrics and Neurocognitive Disorders, I meet with families in their homes or my office to mediate these issues.Often families are surprised to find out about the many good options for care that are available, from in- home care that ranges from a few hours to 24/7 care, supplemented by adult day recreation programs, to excellent memory care assisted living communities and nursing homes. An important part of the mediation is to address the grief, loss, and sometimes denial that family members experience, bringing them to an accordance around a plan of care. Of course, the discussion also includes reviewing funding for care, and referrals to funding sources where possible.
I recently met with a daughter, Jessica, from Massachusetts and her father’s partner of over 20 years, Doreen. Doreen had been providing care for Jessica’s father for the last 3 years and his father’s Neurocognitive Disorder was advancing rapidly, leaving him currently with the developmental abilities of a 5 year old child, needing help with many functions of daily life: medication management, dressing, bathing, meal preparation, and recently toileting assistance. Doreen was burned out from working full time and providing all the care except for a 2 hour a day caregiver 5 days a week. Jessica’s father was home alone except for 2 hours a day with a caregiver, so he was often bored and began to feel more depressed. We identified Jessica’s wish that Doreen could continue to care for her father, yet she understood Doreen’s exhaustion and the need to stop caregiving and return to being a companion/partner. We talked about the way Doreen’s role over the last 3 years slipped into one that was primarily caregiving instead of a life partner, and how stressful and lonely that was for Doreen. During the 2 hour mediation session, Jessica and Doreen agreed on a plan for in-home 24/7 care with Doreen moving out over several weeks, but continuing to visit a few nights a week after work in the role of companion/partner. They were aware of the option of moving Jessica’s father to a memory care community and ultimately to a nursing home with a dementia care specialty, but that wasn’t the first choice.
With the aid of mediation, both Jessica and Doreen were able to develop a plan where everyone’s basic needs were met: Jessica’s needed to know that Doreen would continue to be a part of her father’s life and that her father would have the care and support he needed. Doreen sorely needed a respite from caregiving and to be able to return to her role as companion/partner. Jessica’s father would have high quality paid caregivers who would provide the stimulation and activity needed to keep him from becoming depressed and would keep his functioning as high as possible over time. Both Doreen and Jessica agreed on the steps needed to put in home care and remove Doreen from direct caregiving. Ultimately, they agreed on a good plan for Jessica’s father and, importantly, their relationship with each other was preserved, one of the goals of good mediation. As you can see, family mediation can provide the right help at the right time.
*See Grief and Loss as Alzheimer’s Progresses:https://www.alz.org/care/alzheimers-dementia-grief-loss.asp
Karen Dworski, L.C.S.W. is a Consultant and Mediator for ElderPath LLC; www.elderpath.net; 860-652-8809; firstname.lastname@example.org
Thank you Karen for submitting this. And thank you all for reading our blog. For more information about stages of dementia, services which may help you or how to schedule a dementia consultation, call Hebrew HealthCare at 860-920-1810. ~Pam