Developing an expectations questionnaire for caregivers of people with Alzheimer’s disease and related dementias: Phase I qualitative exploration
Background: Alzheimer’s disease and related dementias are neurodegenerative disorders characterized by progressive declines in cognition and functioning. Caregivers often bear much of the responsibility for providing daily care and seeking services on the patient’s behalf. Thus, understanding their preferences and expectations of the treatment and prognosis is necessary. However, few studies have examined caregivers’ subjective beliefs regarding the probable disease progression, or the types and intensity of care they anticipate will be needed by the patient and themselves.
Methods: Using a purposive sampling approach, seventeen caregivers were recruited through snowballing, the Alzheimer’s Society and Seniors Health, and participated in semi-structured interviews about their experiences and expectations of the disease progression and dementia care. Ten health professionals (5 physicians, 5 allied clinicians) have also been recruited and will be interviewed about their perceptions of the expectations and anticipated needs of caregivers. An analytic inductive approach to the analysis was adopted.
Findings & Discussion: Caregiver expectations were often tied to dementia-related transitions such as confronting driving cessation, accepting Home Care, and relocating to residential care. Regarding medical care, caregivers expected a thorough and accurate assessment of the patient’s cognition and functioning, but they believed this is challenging due to symptom fluctuations and time constraints on health professionals. Moreover, many caregivers did not expect to receive psychosocial support for stress from their family physicians, although this is recommended in the consensus guidelines for dementia. Expectations are often shaped by the participants’ experiences, knowledge of the disease trajectory, and awareness of services.
