Being a care partner to an individual with dementia is hard. Each stage has new challenges, and adapting to them is demanding. So, when I read the newest research on living well with dementia, my initial knee-jerk response was “great—it is all back to us—the care partner.” But the truth is, at this point in dementia care, we are the only change agents.
Improving the Dementia Experience and Enhancing Active Life, better none as the IDEAL study, is a longitudinal study looking at ‘living well’ with dementia that is being conducted in the UK that started in 2014 and will continue through 2022.1 Quality of life, life satisfaction and sense of well-being were measured for both care partners. Findings show an association between the caregiver’s level of:
- social restrictions
- caregiving competence
- satisfaction with life
and the individual with dementia’s quality of life, satisfaction with life and well-being.2 They have determined these five major caregiving factors that influence “living well” with dementia for both partners.
As a caregiver, I have found that my satisfaction with life, well-being and competence are improved when I attend my favorite support[C1] groups. My perspective is broadened, I see the continuum of need and care, and I find peer support—now more than ever. Note I said favorite, because support groups are like apples, there are many varieties. Virtual support allows you to sample a lot of different groups. I leave my favorite groups with a sense of well-being and hope.
The value of support groups has been affirmed in multiple studies. Meta-analysis showed their role in providing caregivers with the emotional benefits of peer support in facing challenges of caregiving and projecting future plans.3 Support groups are one ingredient to “living well with dementia.”
Take another look at the list of variables for living well—lower stress, less social restriction, higher competence—all of these are self-care items that we as caregivers need for well-being and life satisfaction that then spills over onto our care partner’s life. Yes, the onus is on us, but if we enlist help and seek support, we both win.
1Quinn. C., Nelis ,S.M., Martyr, A., Morris, R.G., Victor, C., Clare, L., 2019. Caregiver influences on ‘living well’ for people with dementia: Findings from the IDEAL study, Aging Mental Health, 1-9. doi:10.1080/13607863.2019.1602590
3Lauritzen, J., Pedersen, P.U., 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. Joanna Briggs Institute Database Systematic Reviews and Implementation Reports,13(6):373-433.