As we enter 2020, a year that came faster than most of us imagined possible, we can use it as a year to focus on perspective. As caregivers of loved ones with dementia, focus and perspective are often warring elements. We focus on the changes we are witnessing and often lose sight of the bigger picture. Or get so focused on the long-range that we miss what is right in front of us.
When we revert to hind sight we may be able to reflect on early signs that our loved one’s brain was changing. Perhaps it was an increased reliance on your assistance with short-term memory. Or maybe it was social inappropriateness. . . when you suddenly felt the awkward silence after a less than tactful statement.
Research shows that disinhibition, inappropriate affect (facial expression) and lack of empathy are often the first clinical signs of neurodegenerative disease especially in Alzheimer’s disease and behavioral variant Frontotemporal Dementia (FTD).1 These clinical signs are apparent years before noticeable impairment on classical neuropsychological assessment and brain atrophy on imaging. Researchers describe lack of self-control, inability to recognize sarcasm and facial expressions—things we may remember well in hindsight.
Thus, began our own caregiver journey, with angst over social settings; with over-planning, over-compensating and reduced socialization. Caregiver burden and distress is heightened in behavioral variant FTD and Creutzfeldt-Jacob disease.2
How do we deal with caregiver burden and distress? Our ability to cope requires us to step back and rest our eyes. Perspective is gained through:
- Support groups
- Respite through in-home care; adult day care
- Education from skilled dementia trainers
- Relieve from doctors who understand dementia and focus on the unique symptoms of your loved one
There will come a time when our ability to focus and our perspective is clouded by distress. At those times we may need more than in-home respite. As we walk this journey, an alternate route should include a memory care community that specializes and understands the different hues and stages of dementia. Both you and your loved one are individuals dealing with your own individual set of changes and challenges. Keep your eyes trained for those offering unique solutions and supports in the year of 2020.
1Desmarais, P., Lanctot, K. L., Masellis, M., Black, S. E., & Herrmann, N. (2018). Social inappropriateness in neurodegenerative disorders, International Psychogeriatrics, 30(2): 197-207.
2Uflacker, A., Edmondson, M. C., Onyike, C.U., & Appleby, B. S. (2016). Caregiver burden in atypical dementias: Comparing frontotemporal dementia, Creutzfeldt-Jakob disease, and Alzheimer’s disease, International Psychogeriatrics, 28(2): 269-273.