The dynamic between caregiver and their loved one with dementia is a complex one that is receiving more energy in the research world. One aspect that is particularly interesting from a caregiver perspective is the matter of perception. When asked to rate their overall quality of life, patients with dementia rated their quality of life higher than their caregivers regardless of their cognitive change.1 This perspective is relevant because we may misunderstand needs. We may think that our loved one needs and desires the same routines and traditions she has always preferred; that change would be problematic when in actuality the opposite may be true.
Likewise, caregivers may find that experiences once enjoyed together have become personally stressful. Then feelings of guilt arise, and the cycle continues. We think that by altering our loved one’s routines and traditions, they will be disappointed. We see our loved one acting out and rather than considering it as disease-based behavior, we perceive it as dissatisfaction or disappointment. Our perception is skewed, as research has shown.
When facing holiday traditions, reflect on how your loved one has recently responded to similar events or activities.
- Was he agitated when he was with a large group?
- Was his agitation more visible in the afternoon, as opposed to the morning?
- Is a meal setting easier than a setting with less structure?
- Is your loved one more comfortable with some family members than others?
Apply recent observations to holiday plans instead of relying on a skewed perspective.
This applies to self needs as well. Allow time for self-observation. Research shows that caregivers of loved ones with dementia report unmet needs.2 Caregivers feel the loss of emotional support from an individual who was once a mainstay. Added to this are unmet needs for:
- time away
- mental health
- social support
All of which are complicated by a reluctance to leave a loved one with dementia alone. When in reality, we have options for assistance. We could take advantage of a respite program so that we could take that trip. We could enlist family for time away or hire home health for a regular mental health day.
As we enter the holiday season, consider what your unmet needs are. The old adage If mama ain’t happy, ain’t nobody happy, applies to caregivers also. Caregiver health and feelings of competency directly impact those for whom they care.3 Consider giving you and your loved one the gifts that you truly need.
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.
1Conde-Sala, J. L., Garre-Olmo, J., Turró-Garriga, O., López-Pousa ,S., Vilalta-Franch, J. (2009). Factors related to perceived quality of life in patients with Alzheimer’s disease: The patient’s perception compared with that of caregivers, International Journal of Geriatric Psychiatry,24(6): 585-594.
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. 77-8-14.
3Spigelmyer, P.C., Hupcey, J.E., Smith, C.A., Loeb, S. J., & Kitko, L. (2017). Resistiveness to care as experienced by family caregivers providing care for someone with dementia, Journal of Nursing Scholarship, Sept. 15, Epub ahead of print.