An elder lawyer once told a spouse of a recently dementia-diagnosed husband, “You know, it’s now all about you, not him. You have to be strong give your best care for him.” The wife looked at her in puzzlement. The changes which occur within a loved one living with dementia are demanding and consuming for the caregiver’s adaptation. Responsibilities which were once shared are now solo which takes over the time that used to be used for self-care. Routines which where once balanced are now tilted with more time going to the individual with dementia than to the one giving care.
Additionally, the individual with dementia becomes more reliant on the caregiver leaving less actual physical space to be alone for meditation, for reading, for exercise. Sometimes called shadowing, this phenomenon of increased reliance and physical proximity stems from the individual with dementia’s fears of failure1. Research shows even though caregivers are aware of the need for time for self-care, they are reluctant to leave their loved one2.
Unmet needs are the topic of several caregiver studies highlighting the caregiver’s need for emotional support, a place to vent negative feelings and time away3. Caregivers expressed unmet mental and physical health needs including:
- Time for self
Yet the elder care lawyer and the research concur, caregivers need to put their health first in order to best care for their loved one. Dementia caregivers fare far worse health-wise than other types of caregivers4. In reality, the caregiver’s health is pivotal to the care and nurturance of your loved one’s health. He or she relies on the caregiver to be their advocate in diagnosis, in medication, and in care. Their best care is your best self-care. Honor your loved one by honoring yourself.
1Fear Drives Shadowing of Alzheimer’s Caregivers, https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/expert-blog/shadowing-and-alzheimers/bgp-20055944
2Tatangelo, G., McCabe, M., Macleod, A., & You, E. 2017. "I just don't focus on my needs." The unmet health needs of partner and offspring caregivers of people with dementia: A qualitative study, International Journal of Nursing Studies, 77: 8-14.
3Lauritzen, J., Pedersen ,PU., Sørensen, E. E., Bjerrum, M. B. 2015. The meaningfulness of participating in support groups for informal caregivers of older adults with dementia: a systematic review, JBI Database System Reviews and Implementation Report, 13(6): 373-433.
4 Tremont, G. 2011. Family Caregiving in Dementia, Medical Health Review, 94(2): 36-38.
By-line: Cate McCarty, PhD, ADC has been collaborating with Arden Courts in a variety of roles since the late 90’s. Her background in nursing, activities and admissions has given her a passionate commitment to quality of life for the individual and family with dementia. Cate is now personally caring for her spouse who has an FTD diagnosis.