\"Coming To terms\": A grounded theory of dementia caregivers' journeys and expectations of care



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“Coming to Terms” presents the subjective narratives of family members about what constitutes quality long-term care (LTC) for loved-ones with dementia. It uses those narratives to develop a grounded theory of shared meanings of dementia care that reflects the basic social process by which family members formulate their initial expectations of care delivered in LTC settings.\r\n Family members transition through a five-stage process when dementia affects a loved-one. As they move through these stages, the family members process the realities of dementia and dementia care, grapple with the decision to place their loved-one in a LTC facility, and, ultimately, formulate expectations of the care they want the LTC facility to provide. In essence, family members expect the LTC facility to (1) fulfill their love-one’s basic needs, (2) provide pleasant surroundings, (3) ensure a competent staff, (4) ensure a caring staff, (5) facilitate communication, and (6) practice timely institutional responsiveness. The family members’ expectations not only play a critical role in the initial evaluation of LTC facilities but are also used subsequently to measure the effectiveness of the LTC facility in which the loved-one has actually been placed.\r\n Although the expectations of care described in this study are consistent with the findings of prior studies of expectations of care in other contexts, “Coming to Terms” breaks new ground by illustrating the transitional process through which family members’ expectations of dementia care are germinated, tested, refined, and fully formulated. Rich, descriptive detail informed these results and the participants are acknowledged and appreciated.\r\n The findings of this study can help LTC facilities better understand the issues and concerns of the families whom they serve and aid in the development of LTC policies and procedures that foster greater consumer satisfaction and peace of mind. \r\n



transition, long term care, family member, expectations, dementia