By Dr. Kristen Dillon
Every Thursday afternoon I would make the thirty-minute drive to a local mobile home park where I would meet with Anna*, a 68-year old woman, who was the sole caregiver for her 95-year-old mother with dementia. Before I arrived, Anna would help her mother to the bathroom and then take her to her room for a nap. Every week we would sit for an hour and Anna would talk about how burdened she felt and the guilt that accompanied her negative feelings toward caregiving. We would talk about how depressed she was and her ambivalence about placing her mother in a nursing home, if that was something she could even afford. We also talked about her relationships, or lack there of, with her mother and others and how these had changed since the onset of the disease.
Without fail, during every meeting, Anna’s mother would venture out of her room and interrupt our session. Anna would become irritated and often angry, yelling at her mother go back to her room. At times her mother would readily comply, while at other times she would become agitated and refuse to leave the kitchen. Anna would then talk about how guilty she felt because of the ways in which she reacted to her mother. I would sit, feeling helpless, watching the distress associated with caregiving unfold before my eyes.
Anna’s experience with caregiving was not unique. It is estimated that between 70-87% of people with dementia live in the home and receive care from a family member (Oken et al. 2009; Martin-Carrasco et al. 2009) and that half of all family caregivers experience some sort of burden (Bruce et al., 2008). Moreover, between 30-70% of family caregivers experience depression and one may posit that many experience grief-related symptoms (Holley, 2009).
Dementia-related illnesses affect not only the caregiver and family, but also society due to the decrease in independence accompanying dementia and the use of healthcare systems. For instance, it was estimated that in 2012 the costs of healthcare for dementia and related illnesses would reach $200 billion in the United States (Forrer, 2012). Moreover, by the year 2050 the estimate reaches a staggering one trillion dollars per year in healthcare costs for those with dementia (Forrer, 2012).
For the next several months I will be focusing on Dementia Caregivers as a part of our Family Caregivers for Dementia Series. I will examine common experiences among dementia caregivers, such as depression, anticipatory grief, burden, and physical health. Please join me once every month as I highlight the importance of caregiving and the joys and sorrows that accompany the caregiving experience.
*Names changed to protect the privacy of those mentioned in this blog
Kristen Dillon, Psy.D. is a postdoctoral fellow specializing in geriatric psychology within the VA healthcare system.