When a caregiver first receives the news of their loved one’s diagnosis, there is already a history of compensating for behaviors and memory change. As a caregiver, you have already been a one-man band working alone to orchestrate life as it once was. Your loved one’s cognitive changes have changed the overall harmony into discordant noise.
Research shows that dementia puts caregivers at risk of overburdening. You understand this. In reality it probably was your own feeling of burden that precipitated seeking a diagnosis. Another statement that might resonate with you as a caregiver: “Caring for a relative or friend with dementia may lead to serious mental health problems.”1 What are the mechanisms that cause all this discord?
Caregivers report the strain of managing change.
- Constantly having to switch
- Keeping vigil for safety and social appropriateness
- On-going need to re-direct or distract
- Having others see a different side of the person
- Knowing what to do but being unable to do it
Study has shown that a higher amount of caregiver involvement in care is significantly related to negative health outcomes for the caregiver.2 In fact, on average one hour extra of care per day was associated with a significant decrease in psychological well-being, self-rated overall health and health care use. Caregiver variables that showed association with use of more health services included: older age; being married, higher education; depression; higher functional disability needs; less activity days due to illness; more medications; more symptoms and less hours on duty.3
So, it is not just the dementia diagnosis affecting the harmony, but the changes and the personal variables together that produce unmanageable dynamics. The one-man band is overworked, underpaid and ready to fold. So how do we add instruments and players to bring back harmony?
The Journal of Holistic Nursing published a study of self-care strategies that included self-nourishment, spiritual reliance; and seeking information about dementia.4 Self nourishment might include face-to-face coaching and tailored web-based modules as were shown successful in the study “Partners in Balance.”5
Orchestrating self-care might include guided self-help internet interventions6. Your self-care strategies might be more basic: looking for distractions, getting rest, and discussing feelings and experiences.7
No matter the study, all the outcomes point to the need for dementia caregivers to orchestrate self-care. Let the new year be one of adding to your band.
Reach beyond the familiar solo to strategies you have never tried before. Maybe it is meditation, Tai Chi, or a new internet opportunity to grow or to express. We must grow faster than the dementia progresses in order to achieve some kind of harmony.
