Caregiving for an individual with dementia starts long before the individual with dementia is willing to admit the shift in roles. A caregiver recently asked her husband with early stage Alzheimer’s if he sees her as a caregiver. He answered with a vehement, “No, I do everything for myself, as I have for years.” Yet his wife expressed how much she has had to change in scheduling, in listening to repeated stories, and in leisure activities. The individual with dementia does not recognize deficits as quickly as those closest to him or her. This is one of the first shifts in the relationship. The relational strength of agreement and accord which was solid begins to fracture with a diagnosis of dementia.
Caregiving research has defined the elements of caregiver loss in terms of scale. Caregivers expressed:
- shrinkage of personal space
- shrinkage of social interaction
- shrinkage of intimacy and relationship
In the case of dementia, the loved one may have a much shorter comfort distance, with caregivers reporting not being able to be away as long. Social interaction becomes awkward as the individual with dementia forgets names or begins to isolate from conversation. The increased need for reminders and direction supersede the intimacy once shared and the relationship changes.
On the opposite side of the scale, caregivers express the shift in:
- Magnitude of responsibility
- Magnitude of powerlessness over the cognitive decline
- Magnitude of the gap in long-term relationships
Tasks that were once done by the individual with dementia are no longer reliably completed, increasing caregiver responsibility. Shared tasks become solo tasks. Meanwhile, the caregiver‘s search for a solution to cognitive decline yields little hope, and the original long-term relationship that morphs into one far less comfortable. Loneliness is the word that captures the overall feelings attributed to caregiving for loved ones.
Research shows that caregivers can bridge the gaps of loneliness with increased education, support, and respite. In the case of dementia caregivers, Arden Courts can be the conduit for caregiver support. Arden Courts provides:
- Dementia-specific education through a resource library and seminars
- Support via telephone contact, support groups, and memory cafes
- Respite care
If you are struggling with loneliness due to a diagnosis of dementia, reach out to Arden Courts –because memory care is all they do.
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.
Vasileiou, K., Barnett, J., Barreto, M., Vines, J., Atkinson, M., Lawson, S., Wilson, M.. (2017). Experiences of loneliness associated with being an informal caregiver: A qualitative Investigation, Frontiers in Psychology, 19:8-585.