Learning objectives:
- Be able to describe the physical and emotional challenges that family members face in their day-to-day work as caregivers.
- Understand the concept of ambiguous loss in the context of caring for a family member with dementia.
- Learn about depression in caregivers and the factors known to improve their overall well-being.
- Describe the complex decisions caregivers face surrounding medical care and death of loved ones with dementia at the end of life.
Abstract:
Dementia is a common, devastating disease that takes a significant toll on individual patients, their families, and their communities. In this podcast, we discuss the unspoken challenges of caring for a family member with dementia. In the United States, 16.1 million individuals provide unpaid care for someone with dementia (confirm source and cite, for each source too) These are most often family members who face frustration, isolation, and many difficult decisions regarding the care of their loved one. The show explores the experience of ambiguous loss, where the person is both here and not here at the same time. Through stories, we explore why caregivers have such high rates of depression and how difficult it may be to live with the fear of getting the disease yourself. We highlight ways in which to support caregivers, in hopes of improving the overall health of individuals who take on such an important and challenging role.
Discussion questions:
- Pauline Boss discussed the concept of ambiguous loss related to family members with dementia. How did you react to this? How can “both-and thinking” be a strategy to help individuals deal with this type of loss?
- The show explores how human connection can help prevent caregivers’ depressive symptoms and improve their quality of life. Could the relationship with a mental health professional provide this type of connection?
- What was your reaction to the discussion of death and dying? Specifically, how did you respond to caregivers wishing for the death of a family member with dementia?
- Dr. Hallward discusses being a caregiver to her future self by writing a letter to her future caregivers. If you were going to write such a letter for yourself, what would you most want to include, fears you have, especial requests? Is this something you could envision recommending to future clients?
Links to additional resources:
National Institute on Aging
Information from the National Institute on Aging about Alzheimer’s and related dementias
Caregivers Count Too! Toolkit
An Online Toolkit to Help Practitioners Assess the Needs of Family Caregivers
Next Step in Care
Resources and tools for providers who interact with family caregivers before, during, and after transitions of care
National Center on Elder Abuse
Educational and training materials on elder abuse
Stanford Older Adult Family Center
Specific training from Stanford Medicine
Books
Ambiguous Loss, Pauline Boss
Loving Someone Who Has Dementia, Pauline Boss
Articles
“Caregiving, Bereavement, and Complicated Grief,” Katherin Boerner and Richard Shulz
This article defines complicated grief and offers practical suggestions for what professionals can do to help caregivers both before and after the death has occurred.
