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1.
BMC Health Serv Res ; 24(1): 607, 2024 May 09.
Article in English | MEDLINE | ID: mdl-38724975

ABSTRACT

BACKGROUND: Primary health care has a central role in dementia detection, diagnosis, and management, especially in low-resource rural areas. Care navigation is a strategy to improve integration and access to care, but little is known about how navigators can collaborate with rural primary care teams to support dementia care. In Saskatchewan, Canada, the RaDAR (Rural Dementia Action Research) team partnered with rural primary health care teams to implement interprofessional memory clinics that included an Alzheimer Society First Link Coordinator (FLC) in a navigator role. Study objectives were to examine FLC and clinic team member perspectives of the impact of FLC involvement, and analysis of Alzheimer Society data comparing outcomes associated with three types of navigator-client contacts. METHODS: This study used a mixed-method design. Individual semi-structured interviews were conducted with FLC (n = 3) and clinic team members (n = 6) involved in five clinics. Data were analyzed using thematic inductive analysis. A longitudinal retrospective analysis was conducted with previously collected Alzheimer Society First Link database records. Memory clinic clients were compared to self- and direct-referred clients in the geographic area of the clinics on time to first contact, duration, and number of contacts. RESULTS: Three key themes were identified in both FLC and team interviews: perceived benefits to patients and families of FLC involvement, benefits to memory clinic team members, and impact of rural location. Whereas other team members assessed the patient, only FLC focused on caregivers, providing emotional and psychological support, connection to services, and symptom management. Face-to-face contact helped FLC establish a relationship with caregivers that facilitated future contacts. Team members were relieved knowing caregiver needs were addressed and learned about dementia subtypes and available services they could recommend to non-clinic clients with dementia. Although challenges of rural location included fewer available services and travel challenges in winter, the FLC role was even more important because it may be the only support available. CONCLUSIONS: FLC and team members identified perceived benefits of an embedded FLC for patients, caregivers, and themselves, many of which were linked to the FLC being in person.


Subject(s)
Primary Health Care , Rural Health Services , Humans , Primary Health Care/organization & administration , Saskatchewan , Rural Health Services/organization & administration , Female , Male , Alzheimer Disease/therapy , Alzheimer Disease/psychology , Retrospective Studies , Patient Navigation/organization & administration , Qualitative Research , Interviews as Topic , Aged , Patient Care Team/organization & administration
2.
J Interprof Care ; 38(2): 319-330, 2024.
Article in English | MEDLINE | ID: mdl-37161449

ABSTRACT

As interprofessional collaboration (IPC) in primary care receives increasing attention, the role of electronic medical and health record (EMR/EHR) systems in supporting IPC is important to consider. A scoping review was conducted to synthesize the current literature on the barriers and facilitators of EMR/EHRs to interprofessional primary care. Four online databases (OVID Medline, EBSCO CINAHL, OVID EMBASE, and OVID PsycINFO) were searched without date restrictions. Twelve studies were included in the review. Of six facilitator and barrier themes identified, the key facilitator was teamwork support and a significant barrier was data management. Other important barriers included usability related mainly to interoperability, and practice support primarily in terms of patient care. Additional themes were organization attributes and user features. Although EMR/EHR systems facilitated teamwork support, there is potential for team features to be strengthened further. Persistent barriers may be partly addressed by advances in software design, particularly if interprofessional perspectives are included. Organizations and teams might also consider strategies for working with existing EMR/EHR systems, for instance by developing guidelines for interprofessional use. Further research concerning the use of electronic records in interprofessional contexts is needed to support IPC in primary care.


Subject(s)
Electronic Health Records , Interprofessional Relations , Humans , Primary Health Care
3.
Can J Aging ; 42(1): 165-176, 2023 03.
Article in English | MEDLINE | ID: mdl-36352769

ABSTRACT

With increasing numbers of persons living with dementia and their higher rates of hospitalizations, it is necessary to ensure they receive appropriate and effective acute care; yet, acute care environments are often harmful for persons with dementia. There is a lack of dementia education for acute health care providers in Canada. Scotland presently delivers a dementia education program for health care providers, known as the Scottish National Dementia Champions Programme. The objective of this Policy and Practice Note is to present the collaborative work of Scottish experts and Canadian stakeholders to adapt the Dementia Champions Programme for use in Canada. This work to date includes: (a) an environmental scan of Canadian dementia education for acute health care providers; (b) key informant interviews; and, (c) findings from a two-day planning meeting. The results of this collaborative work can and are being used to inform the next steps to develop and pilot a Canadian dementia education program.


Subject(s)
Dementia , Health Personnel , Humans , Canada , Dementia/therapy , Scotland
4.
PLoS One ; 17(9): e0274769, 2022.
Article in English | MEDLINE | ID: mdl-36137130

ABSTRACT

Participatory research approaches have developed in response to the growing emphasis on translation of research evidence into practice. However, there are few published examples of stakeholder engagement strategies, and little guidance specific to larger ongoing research programs or those with a rural focus. This paper describes the evolution, structure, and processes of an annual Rural Dementia Summit launched in 2008 as an engagement strategy for the Rural Dementia Action Research (RaDAR) program and ongoing for more than 10 years; and reports findings from a parallel mixed-methods study that includes stakeholder and researcher perspectives on the Summit's value and impact. Twelve years of stakeholder evaluations were analyzed. Rating scale data were summarized with descriptive statistics; open-ended questions were analyzed using an inductive thematic analysis. A thematic analysis was also used to analyze interviews with RaDAR researchers. Rating scale data showed high stakeholder satisfaction with all aspects of the Summit. Five themes were identified in the qualitative data: hearing diverse perspectives, building connections, collaborating for change, developing research and practice capacity, and leaving recharged. Five themes were identified in the researcher data: impact on development as a researcher, understanding stakeholder needs, informing research design, deepening commitment to rural dementia research, and building a culture of engagement. These findings reflect the key principles and impacts of stakeholder engagement reported in the literature. Additional findings include the value stakeholders place on connecting with stakeholders from diverse backgrounds, how the Summit was revitalizing, and how it developed stakeholder capacity to support change in their communities. Findings indicate that the Summit has developed into a community of practice where people with a common interest come together to learn and collaborate to improve rural dementia care. The Summit's success and sustainability are linked to RaDAR's responsiveness to stakeholder needs, the trust that has been established, and the value that stakeholders and researchers find in their participation.


Subject(s)
Dementia , Stakeholder Participation , Dementia/therapy , Health Services Research , Humans , Research Personnel , Rural Population
5.
Prim Health Care Res Dev ; 23: e32, 2022 05 23.
Article in English | MEDLINE | ID: mdl-35604026

ABSTRACT

Dementia-related continuing education opportunities are important for rural primary health care (PHC) professionals given scarce specialized resources. This report explores the initial perceptions and continuing education needs of rural interprofessional memory clinic team members and other PHC professionals related to a short series of dementia-related education webinars. Three webinars on separate topics were delivered over an 8-month period in 2020 in Saskatchewan, Canada. The research design involved analysis of webinar comments and post-webinar survey data. Sixty-eight individuals participated in at least one webinar, and 46 surveys were completed. Rural memory clinic team members accounted for a minority of webinar participants and a majority of survey respondents. Initial perceptions were positive, with webinar topics and interactivity identified as the most effective aspects. Continuing education needs were mainly aligned with professional roles; however, some overlap of interests occurred. Future webinars will further explore learning needs within an interprofessional environment.


Subject(s)
Dementia , Education, Continuing , Dementia/therapy , Health Personnel , Humans , Primary Health Care , Saskatchewan
7.
BMC Health Serv Res ; 22(1): 148, 2022 Feb 04.
Article in English | MEDLINE | ID: mdl-35120516

ABSTRACT

BACKGROUND: The aging of rural populations contributes to growing numbers of people with dementia in rural areas. Despite the key role of primary healthcare in rural settings there is limited research on effective models for dementia care, or evidence on sustaining and scaling them. The purpose of this study was to identify factors influencing sustainability and scale-up of rural primary care based memory clinics from the perspective of healthcare providers involved in their design and delivery. METHODS: Participants were members of four interdisciplinary rural memory clinic teams in the Canadian province of Saskatchewan. A qualitative cross-sectional and retrospective study design was conducted. Data were collected via 6 focus groups (n = 40) and 16 workgroup meetings held with teams over 1 year post-implementation (n = 100). An inductive thematic analysis was used to identify themes. RESULTS: Eleven themes were identified (five that influenced both sustainability and scale-up, three related to sustainability, and three related to scale-up), encompassing team, organizational, and intervention-based factors. Factors that influenced both sustainability and scale-up were positive outcomes for patients and families, access to well-developed clinic processes and tools, a confident clinic leader-champion, facilitation by local facilitators and the researchers, and organizational and leadership support. Study findings revealed the importance of particular factors in the rural context, including facilitation to support team activities, a proven ready-to-use model, continuity of team members, and mentoring. CONCLUSIONS: Interdisciplinary models of dementia care are feasible in rural settings if the right conditions and supports are maintained. Team-based factors were key to sustaining and scaling the innovation.


Subject(s)
Primary Health Care , Rural Population , Cross-Sectional Studies , Humans , Qualitative Research , Retrospective Studies , Saskatchewan
8.
Can J Aging ; 41(1): 71-95, 2022 03.
Article in English | MEDLINE | ID: mdl-34250881

ABSTRACT

Multiple transitions across care settings can be disruptive for older adults with dementia and their care partners, and can lead to fragmented care with adverse outcomes. This scoping review was conducted to identify and classify care trajectories across multiple settings for people with dementia, and to understand the prevalence of multiple transitions and associated factors at the individual and organizational levels. Searches of three databases, limited to peer-reviewed studies published between 2007 and 2017, provided 33 articles for inclusion. We identified 26 distinct care trajectories. Common trajectories involved hospital readmission or discharge from hospital to long-term care. Factors associated with transitions were identified mainly at the level of demographic and medical characteristics. Findings suggest a need for investing in stronger community-based systems of care that may reduce transitions. Further research is recommended to address knowledge gaps about complex and longitudinal care trajectories and trajectories experienced by sub-populations of people living with dementia.


Subject(s)
Dementia , Long-Term Care , Aged , Dementia/therapy , Humans , Patient Discharge
9.
BMJ Open ; 11(10): e053992, 2021 10 25.
Article in English | MEDLINE | ID: mdl-34697124

ABSTRACT

OBJECTIVES: Despite inpatient rehabilitation, many older adults post-hip fracture have difficulty returning to their prefracture levels of function and activity. This scoping review aims to identify interventions for community-dwelling older adults discharged from inpatient rehabilitation and examine the function and activity outcomes associated with these interventions. DESIGN: This scoping review followed Arksey and O'Malley's five-stage framework. DATA SOURCES: We searched MEDLINE, CINAHL, PsycINFO, EMBASE and Ageline electronic databases for English-language articles published between January 1946 and January 2020. ELIGIBILITY CRITERIA: We included studies with health and social interventions involving community-dwelling older adults and their caregivers after hip fracture and inpatient rehabilitation. The interventions were selected if initiated within 60 days post-hip fracture surgery. DATA EXTRACTION AND SYNTHESIS: Two independent reviewers screened abstracts and full texts and extracted the data based on the inclusion criteria. A third reviewer adjudicated any disagreement and collated the extracted data. RESULTS: Of the 24 studies included in the review, most studies (79%) used exercise-based interventions, over half (63%) included activities of daily living training and/or home assessment and environment modification as intervention components, and three studies used social intervention components. Over half of the interventions (58%) were initiated in the inpatient setting and physiotherapists provided 83% of the interventions. Only seven studies (29%) involved tailored interventions based on the older adults' unique needs and progress in exercise training. Six studies (25%) enrolled patients with cognitive impairment, and only one study examined caregiver-related outcomes. Exercise-based interventions led to improved function and activity outcomes. 29 different outcome measures were reported. CONCLUSION: While exercise-based multicomponent interventions have evidence for improving outcomes in this population, there is a paucity of studies, including social interventions. Further, studies with standardised outcome measures are needed, particularly focusing on supporting caregivers and the recovery of older adults with cognitive impairment.


Subject(s)
Activities of Daily Living , Hip Fractures , Aged , Caregivers , Exercise , Humans , Independent Living
10.
Psychol Aging ; 36(7): 834-854, 2021 Nov.
Article in English | MEDLINE | ID: mdl-34591552

ABSTRACT

Interventions for caregivers of persons with dementia are well supported, but it remains unclear whether caregivers benefit from early-stage intervention when caring for persons with mild dementia or mild cognitive impairment (MCI). This systematic review and meta-analysis examined whether early-stage interventions for this population positively affect their well-being and ability to provide care and whether effectiveness varies based on intervention or caregiver/recipient characteristics. Searches of four databases (MEDLINE, EMBASE, PSYCINFO, and CINAHL) yielded 20,722 titles and 1,305 full texts were independently screened. Twenty-two reports representing 18 randomized controlled trial (RCT)/controlled early-stage intervention studies were included for meta-analysis, measuring a variety of outcomes for which effect sizes were calculated using standardized mean differences. Findings suggest that early-stage intervention has a small positive effect on both caregiver well-being and ability to provide care, with the largest effects observed for caregiver anxiety and caring-related distress. Moderator analyses showed no statistically significant difference in effectiveness based on type of intervention (counseling/psychotherapy, psychoeducational, or multicomponent) or individual versus group-based interventions. However, interventions that were caregiver only (vs. dyadic) had larger positive effects on caregiver well-being and ability to provide care. None of the caregiver/recipient characteristics examined (sex, type of relationship, and type of dementia) were related to the effectiveness of early-stage interventions. Although published controlled/RCT trials were limited, findings support efforts to offer early-stage interventions to caregivers of persons with mild dementia or MCI. Further research to determine what intervention types or components are most efficacious would aid the provision of optimal support for caregivers early in their caregiving trajectory. (PsycInfo Database Record (c) 2021 APA, all rights reserved).


Subject(s)
Cognitive Dysfunction , Dementia , Aging , Anxiety , Caregivers , Cognitive Dysfunction/therapy , Dementia/therapy , Humans , Quality of Life , Randomized Controlled Trials as Topic
11.
Dementia (London) ; 20(8): 2708-2724, 2021 Nov.
Article in English | MEDLINE | ID: mdl-33877946

ABSTRACT

Individuals with young onset dementia and their families face unique challenges, such as disruptions to their life cycle and relationships and a dearth of appropriate supports. Financial consequences have also been noted in the literature yet have not been explored in-depth. The purpose of this research was to qualitatively explore carers' experiences of financial consequences resulting from the young onset dementia of a family member and how these consequences may be managed. Eight carers (7 women and 1 man) provided a written online narrative about their journey with young onset dementia and any financial consequences experienced, with open-ended prompts to elicit details not yet shared. Narratives were inductively coded and analyzed using a thematic narrative approach. Carers described a voluntary or involuntary end to employment for the person with young onset dementia around the time of diagnosis. This engendered ongoing and anticipated financial consequences, combined with the need for carers to balance employment with the provision of care (which often meant early retirement for spousal carers). Common themes were tension between the needs to provide care and earn income, altered financial prospects, costs of care, and lack of available and accessible supports to ameliorate financial consequences. Findings illustrate the reality of financial consequences across the trajectory of young onset dementia. These consequences may manifest differently for spousal and child carers and are not being adequately addressed by existing supports.


Subject(s)
Caregivers , Dementia , Child , Employment , Family , Female , Humans , Male , Narration , Qualitative Research
12.
PLoS One ; 16(1): e0244976, 2021.
Article in English | MEDLINE | ID: mdl-33444351

ABSTRACT

BACKGROUND AND OBJECTIVES: People living with dementia deserve to experience the benefits of receiving palliative care and end-of-life services and supports, yet they often do not receive this care compared to those with other terminal diseases. People living with dementia in rural areas often face additional challenges to accessing such care. The purpose of this scoping review was to systematically review and synthesize the literature on palliative and end-of-life care for people with dementia living in rural areas, and to identify and describe key findings and gaps in the literature. METHODS: A collaborative research team approach was used in an iterative process across all stages of this review. Systematic, comprehensive searches were conducted across ten databases and eight targeted websites for relevant peer-reviewed, original research and other less formal literature, published in English, which yielded a total of 4476 results. After duplicate removal, screening, and review, 24 items were included for synthesis. RESULTS: All items were described and illustrated by frequency distribution, findings were grouped thematically, and five key themes emerged, including: 1) Knowledge about dementia, 2) Availability, accessibility, and utilization of palliative and end-of-life care services and supports, 3) Decision-making about care, the value of a person-centered approach and collaborative support, 4) Perspectives on artificial nutrition, hydration, and comfort care, and 5) Quality of life and death. The main gap identified was literature pertaining to rural populations, especially from locations other than the United States. The influence of rurality on relevant findings was mixed across rural-urban comparison studies, as was the effect of sex and gender across the literature. CONCLUSIONS: Several areas were highlighted including the importance of increasing knowledge about dementia, having early conversations about advanced care and treatment options, providing a person-centered approach, and the potential for using technology to address rural access issues. These findings can be used to inform future research and policy and the development of services, supports, and strategies for rural people living with dementia. Further research is recommended.


Subject(s)
Dementia/therapy , Palliative Care , Rural Health Services , Terminal Care , Health Knowledge, Attitudes, Practice , Health Services Accessibility , Humans , Rural Population
13.
Dementia (London) ; 20(2): 653-671, 2021 Feb.
Article in English | MEDLINE | ID: mdl-32126810

ABSTRACT

A dearth of supportive interventions exists for bereaved spouses who were carers of persons with dementia, despite an identified need for such supports. The purpose of the current work was to develop and evaluate a supportive writing intervention for this population that was informed by the experiences of spouses who were bereaved and was specific to the unique context of dementia. Following development of the Reclaiming Yourself tool, a mixed methods design was utilized to assess its effects on grief, depressive symptoms, and balance between restoration and loss. Fifteen participants residing in Saskatchewan and Manitoba were provided the writing intervention and visited three times approximately four weeks apart, completing quantitative measures (for grief, depressive symptoms, and finding balance) at each visit and an exit interview about the intervention. Paired-sample t-tests illustrated trivial effect sizes and no significant differences in grief, depressive symptoms, or balance orientation, with overall means suggesting low levels of depressive symptoms and grief, and a slight orientation towards restoration. Thematic analysis illustrated benefits from the tool, with participants reporting that it provided a structured approach to grief, was a catalyst for emotional expression, and facilitated reflection. The format and timing of the intervention was not ideal for all participants. Although Reclaiming Yourself did not affect quantitatively measured grief, depressive symptoms, and balance, carers accrued benefits from the tool that align with beneficial processes observed in other writing interventions. While more research on the effectiveness of this tool is needed, such interventions are valuable to support the well-being of carers who are bereaved following the death of a spouse with dementia.


Subject(s)
Bereavement , Caregivers/psychology , Dementia , Grief , Humans , Spouses
14.
Can J Aging ; 39(4): 545-585, 2020 12.
Article in English | MEDLINE | ID: mdl-31975685

ABSTRACT

This scoping review mapped and synthesized published literature related to education and support services for individuals with dementia and their caregivers living rurally. Specifically, we investigated education and support service needs, availability and use of services, barriers to service access and use, and solutions to these barriers. Empirical, English-language articles (2,381) were identified within MEDLINE, CINAHL, PSYCINFO, and EMBASE. Articles were screened according to Arksey and O'Malley's (2005) five-stage scoping review methodology and the recommendations of Levac et al. (2010). Findings suggest limited availability of rural dementia-related support and education services, particularly respite care and day programs. Service use varied across studies, with barriers including low knowledge regarding services, practicality, and resource issues (e.g., transportation, financial), values and beliefs, stigma, and negative perceptions of services. Solutions included tailored and person-centred services, technological service provision, accessibility assistance, inter-organization collaboration, education regarding services, and having a "point of entry" to service use.


Subject(s)
Caregivers/education , Dementia/therapy , Health Services Accessibility , Needs Assessment , Rural Population , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Social Stigma , Social Support
15.
SAGE Open Nurs ; 6: 2377960820974816, 2020.
Article in English | MEDLINE | ID: mdl-35155764

ABSTRACT

INTRODUCTION: Care of persons living with chronic conditions rests heavily on women within the context of the family. Research demonstrates that women experience more caregiving strain compared to men, yet less is known about the differences in experiences between women carers: namely, wives and daughters. OBJECTIVE: The purpose of this study was to examine and compare the experiences of wife and daughter carers of older adults living with Alzheimer disease and related dementias, plus at least two other chronic conditions. METHODS: Using qualitative description with Wuest's feminist caring theory of precarious ordering as an analytic framework, interview transcripts of women carer participants who were from the control group of a larger multi-site mixed methods study evaluating the web-based intervention My Tools 4 Care were analyzed. FINDINGS: Both wives and daughters experienced daily struggles, altered prospects, and ambivalent feelings around their caring role. Negotiating the role of professional carer was an important part of balancing caring demands and anticipating the future, and women took an active role in trying to harness caring resources. Findings indicated wives and daughters were generally similar in how they described their caregiving, although daughters reported more shared caring and decision-making, and needed to balance paid employment with caregiving. CONCLUSION: Wives and daughters face similar challenges caring for persons with a dementia and multiple chronic conditions, and actively engage in strategies to manage caring demands. The findings illuminate the importance of accessible, appropriate support from professional carers/health care providers, and suggest that assistance navigating such supports would benefit women carers.

16.
Res Gerontol Nurs ; 13(2): 73-81, 2020 03 01.
Article in English | MEDLINE | ID: mdl-31697397

ABSTRACT

With their education and skill set, nurse practitioners (NPs) are ideally situated to provide primary care to long-term care (LTC) residents, and this is a timely development as physician presence in LTC has been decreasing. A sequential follow-up explanatory mixed methods design was used for the current study, which focused on the interviews that followed the initial survey. The sample included seven NPs who work with LTC residents in urban and rural settings in a western Canadian province. The interviews provided an opportunity for in-depth discussion regarding survey results. Interpretive description guided the data analysis. NPs provide timely access to primary care, address medication reconciliation, decrease transfers to hospitals, and take part in collaborative practice. NPs promote the health care goals of LTC residents. Departments of health would benefit from the inclusion of a wider range of health providers, including NPs, to provide timely access to quality care in LTC facilities. [Research in Gerontological Nursing, 13(2), 73-81.].


Subject(s)
Long-Term Care , Nurse Practitioners , Nurse's Role , Patient-Centered Care , Skilled Nursing Facilities , Adult , Aged , Humans , Interviews as Topic , Middle Aged , Nurse Practitioners/statistics & numerical data , Nurse Practitioners/supply & distribution , Qualitative Research , Saskatchewan , Surveys and Questionnaires
17.
BMC Health Serv Res ; 19(1): 709, 2019 Oct 17.
Article in English | MEDLINE | ID: mdl-31623609

ABSTRACT

BACKGROUND: With rural population aging there are growing numbers of people with dementia in rural and remote settings. The role of primary health care (PHC) is critical in rural locations, yet there is a lack of rural-specific PHC models for dementia, and little is known about factors influencing the development, implementation, and sustainability of rural PHC interventions. Using a community-based participatory research approach, researchers collaborated with a rural PHC team to co-design and implement an evidence-based interdisciplinary rural PHC memory clinic in the Canadian province of Saskatchewan. This paper reports barriers and facilitators to developing, implementing, and sustaining the intervention. METHODS: A qualitative longitudinal process evaluation was conducted over two and half years, from pre- to post-implementation. Data collection and analyses were guided by the Consolidated Framework for Implementation Research (CFIR) which consists of 38 constructs within five domains: innovation characteristics, outer setting, inner setting, individual characteristics, and process. Data were collected via focus groups with the PHC team and stakeholders, smaller team workgroup meetings, and team member interviews. Analysis was conducted using a deductive approach to apply CFIR codes to the data and an inductive analysis to identify barriers and facilitators. RESULTS: Across all domains, 14 constructs influenced development and implementation. Three domains (innovation characteristics, inner setting, process) were most important. Facilitators were the relative advantage of the intervention, ability to trial on a small scale, tension for change, leadership engagement, availability of resources, education and support from researchers, increased self-efficacy, and engagement of champions. Barriers included the complexity of multiple intervention components, required practice changes, lack of formal incentive programs, time intensiveness of modifying the EMR during iterative development, lack of EMR access by all team members, lack of co-location of team members, workload and busy clinical schedules, inability to justify a designated dementia care manager role, and turnover of PHC team members. CONCLUSIONS: The study identified key factors that supported and hindered the development and implementation of a rural-specific strategy for dementia assessment and management in PHC. Despite challenges related to the rural context, the researcher-academic partnership was successful in developing and implementing the intervention.


Subject(s)
Dementia/therapy , Health Services Accessibility , Primary Health Care/organization & administration , Rural Health Services/organization & administration , Female , Focus Groups , Humans , Longitudinal Studies , Male , Process Assessment, Health Care , Qualitative Research , Saskatchewan
18.
BMJ Open ; 9(9): e031423, 2019 09 24.
Article in English | MEDLINE | ID: mdl-31551389

ABSTRACT

OBJECTIVES: To understand how bereaved spousal caregivers of persons with dementia perceive and respond to changes over the course of their spouse's disease, from diagnosis into bereavement. DESIGN: Qualitative interview study with convenience sampling and thematic analysis approach. PARTICIPANTS: Participants included eight women and two men (n=10) who had been spousal caregivers for a person with dementia prior to his/her death. Participants were older adults who self-reported good health and were bereaved longer than a year. SETTING: Data collected in a small Canadian prairie city between fall 2014 and winter 2015. FINDINGS: Two overarching themes were developed as important components of participants' caregiving journey: emotional reactions to change and variation in social connectedness throughout the caregiving and bereavement journey. Four key sub-themes developed through the analysis of emotional reactions to events: memorable grief overshadows persistent grief, a progressive feeling of hopelessness and overwhelmed, relief is common but hidden and gratitude is a milestone in a constructive bereavement. Three key variations of social connectedness throughout the caregiving and bereavement journey were developed: the importance of social inclusion throughout a caregiving and bereavement journey, the repeated loss of companionship and withdrawing from social interactions is contingent on needs. CONCLUSIONS: The findings suggest that emotional changes throughout caregiving and bereavement are not linear. The need for support from family, friends and new social supports is influential in enabling the caregiver to move forward during caregiving and bereavement.


Subject(s)
Adaptation, Psychological , Bereavement , Caregivers/psychology , Dementia , Depression/psychology , Interpersonal Relations , Psychological Distress , Social Support , Aged , Canada , Dementia/diagnosis , Dementia/mortality , Dementia/psychology , Family/psychology , Female , Hospice Care/psychology , Humans , Male , Qualitative Research
19.
BMJ Open ; 9(5): e028441, 2019 05 10.
Article in English | MEDLINE | ID: mdl-31079088

ABSTRACT

INTRODUCTION: Caregivers 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 ANALYSIS: The 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 DISSEMINATION: Findings from this review will be disseminated via conferences and peer-reviewed publication, and a summary will be provided to the Alzheimer Society. PROSPERO REGISTRATION NUMBER: CRD42018114960.


Subject(s)
Caregivers/psychology , Cognitive Dysfunction/nursing , Dementia/nursing , Research Design , Systematic Reviews as Topic , Cognitive Dysfunction/psychology , Dementia/psychology , Humans , Quality of Life
20.
Can J Aging ; 38(3): 367-383, 2019 09.
Article in English | MEDLINE | ID: mdl-30846013

ABSTRACT

ABSTRACTApplying primary health care (PHC) team-based approaches to diagnosing and treating dementia is considered best practice. Unfortunately, those living in rural and remote areas often have limited access to dementia-specific PHC services. The purpose of this scoping review was to identify and understand PHC team-based approaches for dementia care in rural settings. A search strategy was employed which included only peer-reviewed journal articles that were published from 1997 to 2017. Four databases (Embase, Medline, PsycInfo, and CINAHL) were searched from March 2017 to May 2017. Among the 10 studies included there was a variation in the degree of collaboration and interaction among the care teams. Limited information existed about collaboration strategies among care teams. An adaptation of the socio-ecological model enabled us to categorize key factors influencing collaborative team-based approaches. Combined, these findings can be used to inform both future research and the development of a rural PHC dementia model.


Subject(s)
Dementia/therapy , Patient Care Team/organization & administration , Primary Health Care/organization & administration , Rural Population , Aged , Cooperative Behavior , Health Services Accessibility/organization & administration , Humans , Rural Health Services/organization & administration
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