Oregon Health & Science University
Someone in the United States develops Alzheimer’s disease every 68 seconds; by 2050 it will be every 33 seconds (Alzheimer’s Association, 2013b). Nationwide caregivers provide 80% of the care given in the community (Institute of Medicine, 2008). Dementia is increasingly cited as a reason for long-term care. In 2010, forty-two percent of residents in assisted living had Alzheimer’s disease or other related dementias (Polzer, 2013). When family caregivers (FCGs) are no longer able to provide the care required, transitioning into AL or other long-term care environment is often necessary.
This dissertation used a qualitative descriptive approach to examine how the AL’s approach to visitation between the FCG and the PWD influenced the admission transition for the FCG. The specific aims were to 1) describe the FCGs’ experience when a PWD transitions to AL; and 2) describe how the FCGs understanding of visitation recommendations of the AL (encouraged, neither encouraged nor discouraged, discouraged) influenced the FCGs’ perceptions of and reactions to the admission transition.
This study identified the driving force behind the family caregivers’ (FCGs) decision to transition a person with dementia (PWD) to assisted living (AL) was the safety of the PWD or the people around them. For FCGs providing care in their own home this was often coupled with exhaustion. For most of the FCGs in this study, the upheaval associated with the transition never really subsided, even years after the initial move. They did not follow a linear progression, but instead vacillated between the overwhelmed phase, the adjustment phase, and initial acceptance (Brooke, 1988; S. A. Wilson, 1997). The ability to transition appeared to be predicated on the ability of the PWD to complete the adjustment phase and achieve initial acceptance. This offers an opportunity to re-conceptualize transition as a dynamic interdependent process and shift the focus of care from an individual patient centered approach to one that is family centered. Not only does this finding have theoretical and clinical implications, but also implications for research. By limiting investigation to those who are only 6-12 months out from the move, researchers may be missing important information that will expand our understanding of this phenomenon.
Each act of caregiving performed by the FCG in this study was a way to stay connected to the PWD, of not forgetting the PWD as the disease progressed. Interventions studies are needed to examine the extent to which connection supports the transition process.
This study extended our understanding by identifying fear as a strong motivator for visitation. The greater the fears, the more often FCGs visited. The effect of fear on the frequency of visitation and the ability of FCGs to find balance suggests that nursing and AL staff may play an integral role in providing guidance and assurances that the PWD will receive the care and support they need.
In this study FCGs were allowed to come and go as they pleased. FCGs perceived this approach as helpful, if not physically taxing. ALs frequently contacted the FCGs to assist with calming the PWD when the PWD became agitated. It is unknown whether this was motivated by concern for the PWD or to reduce staffing needs. Regardless of the reason, the FCGs found the openness of the visitation schedule comforting. However, without guidance from the AL staff, FCGs may inadvertently prolong the time for transitioning for the PWD.
Expansion of our understanding of this process may provide knowledge that could be utilized to develop and test interventions to best support FCGs, PWDs, and AL staff. Not enough is known about the phenomenon suggesting further qualitative investigation is needed. Additionally, before quantitative studies can be performed that evaluate the impact of fear on visitation the development of a valid and reliable measure needs to occur.
School of Nursing
Sexson, Kathryn E., "Assisted living homes and the dementia caregiver : do assisted living home visitation recommendations matter?" (2014). Scholar Archive. 3596.