Aboriginal experiences of aging and dementia in a context of sociocultural change: qualitative analysis of key informant group interviews with Aboriginal seniors.
Examining the role of culture and cultural perceptions of aging and dementia in the recognition, diagnosis, and treatment of age-related cognitive impairment remains an understudied area of clinical neuropsychology. This paper describes a qualitative study based on a series of key informant group interviews with an Aboriginal Grandmothers Group in the province of Saskatchewan. Thematic analysis was employed in an exploration of Aboriginal perceptions of normal aging and dementia and an investigation of issues related to the development of culturally appropriate assessment techniques. Three related themes were identified that highlighted Aboriginal experiences of aging, caregiving, and dementia within the healthcare system: (1) cognitive and behavioural changes were perceived as a normal expectation of the aging process and a circular conception of the lifespan was identified, with aging seen as going back "back to the baby stage", (2) a "big change in culture" was linked by Grandmothers to Aboriginal health, illness (including dementia), and changes in the normal aging process, and (3) the importance of culturally grounded healthcare both related to review of assessment tools, but also within the context of a more general discussion of experiences with the healthcare system. Themes of sociocultural changes leading to lifestyle changes and disruption of the family unit and community caregiving practices, and viewing memory loss and behavioural changes as a normal part of the aging process were consistent with previous work with ethnic minorities. This research points to the need to understand Aboriginal perceptions of aging and dementia in informing appropriate assessment and treatment of age-related cognitive impairment and dementia in Aboriginal seniors.
Although only 20-50% of individuals with dementia are diagnosed, early diagnosis enables patients and families to access interventions and services, and plan for the future. The current study explored the experiences of rural family caregivers in the period leading up to a diagnostic assessment at a Canadian memory clinic, their hopes and expectations of the assessment, and their experiences in the six months following diagnosis. Using a longitudinal, retrospective and prospective qualitative research design, caregivers of 30 patients referred to the clinic were interviewed during the diagnostic assessment process and again six months after the diagnosis. Most caregivers reported first noticing symptoms two years prior to diagnosis. The pre-diagnostic interviews revealed a prevalent 'need to know' among caregivers that drove the help-seeking process. Caregivers hoped that the diagnosis would have the benefits of 'naming it,' 'accessing treatment,' 'knowing what to expect,' and 'receiving guidance.' When asked six months later about the impact of the diagnosis, the main theme was 'acceptance and moving forward.' Caregivers reported that the diagnosis provided 'relief,' 'validation,' and 'improved access to services.' These findings can inform care practices of primary health care providers who represent the first point of contact regarding expectations and experiences of dementia-related diagnoses.
Canadian Centre for Health & Safety in Agriculture (CCHSA), Royal University Hospital, University of Saskatchewan, Saskatoon, SK, Canada. debra.morgan@usask.ca
This study examined nursing aides' (NAs) perspectives of specific incidents of combative behavior from nursing home residents with dementia, particularly their attributions for the behaviors.
This research is part of a larger mixed-method study exploring combative behavior as experienced by NAs. The data for this component were collected using a cross-sectional survey design. NAs used a prospective event-reporting log or "diary" to record consecutive incidents of combative resident behaviors.
Eleven rural nursing homes located in a mid-Western Canadian province.
Eighty-three full-time, part-time, and casual NAs.
NAs used the diary instrument to document details of each incident of combative behavior over a 144-hour period. Findings from the diaries were explored in subsequent focus groups (reported elsewhere).
The 83 NAs reported 409 incidents linked to residents with dementia, with a range of 1 to 28 incidents per aide. The frequency of incidents in the preceding month was reported as follows: none (11.1%), 1-5 times (58.7%), 6-10 times (11.1%), more than 10 times (19.0%). Most incidents occurred in residents' rooms (65%) during personal care, with the most frequent behaviors reported as slapping, squeezing, punching or hitting, and shoving. The main perceived causes of the behavior were cognitive impairment and residents not wanting care. NAs reported they could control or modify the cause in only 3% of incidents, and they were not optimistic about preventing future combative behaviors. They continued to provide care in 89% of incidents.
In the diaries, NAs identified resident-related factors (cognitive impairment and not wanting care) as the main causes of combative behavior, and they reported having no control over these factors. In the focus groups conducted to explore diary findings, NAs reported system-level factors, also beyond their control, which affected their practices and increased their risk of exposure to combative behavior. Taken together, the results of this research program suggest a need for a broad multifaceted strategy aimed at addressing the modifiable risk factors, which includes recognizing NAs as equal partners in a team process backed by strong organizational support and commitment.
Notes
Comment In: J Am Med Dir Assoc. 2012 Mar;13(3):195-621945459
