Needs of patients with dementia and their caregivers in primary care: lessons learned from the Alzheimer plan of Quebec.

BACKGROUND: Persons living with dementia have various health and social care needs and expectations, some which are not fully met by health providers, including primary care clinicians. The Quebec Alzheimer plan, implemented in 2014, aimed to cover these needs, but there is no research on the effect this plan had on the needs and expectations of persons living with dementia. The objective of this study is to identify persons living with dementia and caregivers' met and unmet needs and to describe their experience. METHODS: This is a sequential mixed methods explanatory design: Phase 1: cross-sectional study to describe the met and unmet health and social care needs of community-dwelling persons living with dementia using Camberwell Assessment of Need of the Elderly and Carers' Assessment for Dementia tools. Phase 2: qualitative descriptive study to explore and understand the experiences of persons living with dementia and caregivers with the use of social and healthcare services, using semi-structured interviews. Data from phase 1 was analyzed with descriptive statistics, and from phase 2, with inductive thematic analysis. Results from phases 1 and 2 were compared, contrasted and interpreted together. RESULTS: The mean total number of needs reported by the patients was 5.03 (4.48 and 0.55 met and unmet needs, respectively). Caregivers had 0.52 met needs (3.16 unmet needs). The main needs for both were memory, physical health, eyesight/hearing/communication, medication, looking after home, money/budgeting. Three categories were mentioned by the participants: Persons living with dementia and caregiver's attitude towards memory decline, their perception of community health services and of the family medicine practice. CONCLUSIONS: Our study confirms the findings of other studies on the most common unmet needs of the patients and caregivers that are met partially or not at all. In addition, the participants were satisfied with access to care, and medical services in primary practices, being confident in their family. Our results indicate persons living with dementia and their caregivers need a contact person, a clear explanation of their dementia diagnosis, a care plan, written information on available services, and support for the caregivers.

Barriers and facilitators to caring for individuals with stroke in the community: the family's experience.

PURPOSE: This project explored caregivers' perceptions regarding the barriers and facilitators to undertaking the post-stroke caregiving role, particularly as related to the health care system, with the ultimate goal of identifying potential strategies that would assist families in successfully undertaking the role. METHOD: A qualitative study consisting of focus groups and individual interviews with caregivers of persons with stroke. Participants were asked about their needs in managing the care of their family member and the factors that facilitated and/or hindered the transition to the home and influenced them in maintaining their role. RESULTS: Information from 14 caregiver participants identified the following as primary barriers to undertaking and maintaining the caregiving role: lack of collaboration with the health care team, the intensity of the caregiving role, the negative impact on the caregiver, and the lack of community support for the caregiving role. Caregivers identified the following factors as facilitative: coordination of care, progress of the patient towards normalcy, mastery of the caregiving role, supportive social environment, and accessible community resources. DISCUSSION AND CONCLUSIONS: The results indicate there are facilitators that caregivers perceive as important both to undertaking and to sustaining the caregiving role. Consideration of these results in the design of interventions may lead to more effective interventions to support caregivers in undertaking and continuing in the caregiver role.

Causal attributions and health behavior choices among stroke and transient ischemic attack survivors.

To reduce the risk of a recurring event in patients who have suffered an initial stroke or transient ischemic attack (TIA), nurses are challenged with implementing and promoting changes in lifestyle and adherence to treatment regimens. Assessing patients' beliefs about the cause of the stroke or TIA is important to understanding their subsequent health behaviors. This study describes the causal attributions and health behavior choices of 9 participants following a stroke or TIA. Attributions were categorized as internal or external and cross-tabulated by controllability. The attributions were compared with health behavior choices. All participants attempted to make causal attributions, both internal (e.g., anxiety, hypertension, lifestyle) and external (e.g., stress, fate). Those making external attributions demonstrated poorer health behavior choices than those making internal attributions; controllability had no influence on behavior. Patients diagnosed more than 6 months before the study tended to make more external attributions. The results can help nurses understand the beliefs that drive the health behavior choices made by stroke and TIA survivors and guide them in tailoring prevention strategies and engaging patients in preventive activities.

Postdischarge nursing interventions for stroke survivors and their families.

BACKGROUND: The physical, cognitive, and emotional sequelae of stroke underscore the need for nursing interventions across the continuum of care. Although there are several published studies evaluating community interventions for stroke survivors, the nursing role has not been clearly articulated. AIM: The aim of this paper is to report a study to describe, using a standardized classification system, the nursing interventions used with stroke survivors during the initial 6 weeks following discharge home. METHODS: In the context of a randomized controlled trial, two nurse case managers provided care to 90 community-dwelling stroke survivors who were assigned to the intervention arm of the trial. The nursing documentation was analysed, using the Nursing Intervention Classification (NIC) system, to identify and quantify the interventions that were provided. FINDINGS: Stroke survivors received, on average, six different interventions. There was a trend for those who were older, more impaired, and who lived alone to receive more interventions. The most commonly reported interventions included those directed towards ensuring continuity of care between acute and community care, family care, and modifying stroke risk factors. The study was limited to the nursing documentation, which may represent an underestimation of the care delivered. CONCLUSIONS: The NIC system was useful in capturing the interventions delivered by the nurse case managers. Nursing interventions are often not clearly articulated and less often use standardized terminology. Describing nursing activities in a standard manner will contribute to an increase in nursing knowledge and to evidence-based practice.