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Caregiver identity in care partners of persons living with mild cognitive impairment.

ABSTRACT: Research on caregiver identity in the context of memory impairment has focused primarily on more advanced stages of the cognitive impairment trajectory (e.g., dementia caregivers), failing to capture the complex dynamics of early caregiver identity development (e.g., MCI; mild cognitive impairment caregivers). The aim of this study was to develop a nuanced understanding of how caregiver identity develops in family and friends of persons living with MCI. Using constructivist grounded theory (ConGT), this study explored caregiver identity development from 18 in-depth interviews with spouses (n = 13), children (n = 3), and friends (n = 2) of persons recently diagnosed with MCI. The overarching themes influencing MCI caregiver identity development included MCI changes, care-related experiences, "caregiver" interpretation, and approach/avoidance coping. These themes influenced how participants primarily identified, represented as I am a caregiver, I am not a caregiver, or liminality (i.e., between their previous identity and a caregiver identity). Irrespective of their current self-identification, all conveyed thinking about their "future self," as providing more intensive care. MCI caregiver identity development in family and friends is a fluid and evolving process. Nearly all participants had taken on care tasks, yet the majority of these individuals did not clearly identify as caregivers. Irrespective of how participants identified, they were engaging in care, and would likely benefit from support with navigating these changes and their new, ambiguous, and evolving roles.

SUBMITTER: Beatie BE

PROVIDER: S-EPMC8564256 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:IntroductionCaregivers of persons with dementia and mild cognitive impairment (MCI) are at risk of decreased well-being. While many interventions for caregivers exist, evidence is sparse regarding intervention timing and effectiveness at an early stage of cognitive decline. Our systematic review aims to answer the following questions: (1) Do interventions for caregivers of persons with early stage dementia or MCI affect their well-being and ability to provide care? (2) Are particular types of caregiver interventions most effective during early stage cognitive decline? (3) How does effectiveness differ when early and later interventions are directly compared? (4) Do effects of early stage caregiver intervention vary based on care recipient and caregiver characteristics (eg, sex, type of dementia)?Methods and analysisThe databases MEDLINE, EMBASE, PSYCINFO and CINAHL, as well as grey literature databases, will be searched for English language studies using search terms related to caregiver interventions and dementia/MCI. Abstracts and full texts will be screened by two independent reviewers; included studies must assess the effects of an intervention for caregivers of persons with early stage dementia or MCI on caregiver well-being or ability to provide care. Intervention, study and participant characteristics will be extracted by two independent reviewers, along with outcome data. Risk of bias will be assessed using the Cochrane risk of bias tool (for controlled trials with and without randomisation). Interventions will be grouped by type (eg, psychoeducational) and a narrative synthesis is planned due to expected heterogeneity, but a meta-analysis will be performed where possible. The Grading of Recommendations, Assessment, Development and Evaluations approach will be used to inform conclusions regarding the quality of evidence for each type of intervention.Ethics and disseminationFindings from this review will be disseminated via conferences and peer-reviewed publication, and a summary will be provided to the Alzheimer Society.Prospero registration numberCRD42018114960.

Project description:Background:Previous publications indicate that Alzheimer's Disease (AD) related cortical atrophy may develop in asymmetric patterns, with accentuation of the left hemisphere. Since fluorodeoxyglucose positron emission tomography (FDG PET) measurements of the regional cerebral metabolic rate of glucose (rCMRgl) provide a sensitive and specific marker of neurodegenerative disease progression, we sought to investigate the longitudinal pattern of rCMRgl in amyloid-positive persons with mild cognitive impairment (MCI) and dementia, hypothesizing asymmetric declines of cerebral glucose metabolism. Methods:Using florbetapir PET and cerebrospinal fluid (CSF) measures to define amyloid-? (A?) positivity, 40 A? negative (A?-) cognitively unimpaired controls (CU; 76?±?5y), 76 A? positive (A?+) persons with MCI (76?±?7y) and 51 A??+?persons with probable AD dementia (75?±?7y) from the AD Neuroimaging Initiative (ADNI) were included in this study with baseline and 2-year follow-up FDG PET scans. The degree of lateralization of longitudinal rCMRgl declines in subjects with A??+?MCI and AD in comparison with A?- CU were statistically quantified via bootstrapped lateralization indices [(LI); range?-?1 (right) to 1 (left)]. Results:Compared to A?- CU, A??+?MCI patients showed marked left hemispheric lateralization (LI: 0.78). In contrast, modest right hemispheric lateralization (LI: -0.33) of rCMRgl declines was found in A??+?persons with probable AD dementia. Additional comparisons of A??+?groups (i.e. MCI and probable AD dementia) consequently indicated right hemispheric lateralization (LI: -0.79) of stronger rCMRgl declines in dementia stages of AD. For all comparisons, voxel-based analyses confirmed significant (pFWE<0.05) declines of rCMRgl within AD-typical brain regions. Analyses of cognitive data yielded predominant decline of memory functions in both MCI and dementia stages of AD. Conclusions:These data indicate that in early stages, AD may be characterized by a more lateralized pattern of left hemispheric rCMRgl declines. However, metabolic differences between hemispheres appear to diminish with further progression of the disease.

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Caregiver identity in care partners of persons living with mild cognitive impairment.

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