Psychological health of caregivers of people with dementia is a major public concern. This study sought to determine the relationship between caregiver burden, psychological distress, frailty and functional dependency of a relative with advanced dementia. Persons with dementia and their caregivers (102 dyads) participated in this Portuguese community based cross-sectional study. Data were collected using the Clinical Dementia Rating Scale, a sociodemographic questionnaire, the Zarit Burden Interview, the Brief Symptoms Inventory and the Edmonton Frail Scale. Alzheimer's disease was the most common type of dementia among the recipients of care, who showed moderate (42.2%) to severe (52.9%) dementia. Among them 35.3% exhibited moderate and 45.1% severe frailty. Family caregivers reported moderate (76.5%) to severe burden (18.6%). Psychological distress was very high among family caregivers. Results show that people with dementia exhibited moderate (35.3%) or severe frailty (45.1%) and that a severe frailty was found in people with moderate dementia. A one-way ANOVA was conducted between the Global Severity Index and some sociodemographic variables. ANOVA reached p < .01 for employment status of the caregiver, assistance and professional support, and psychiatric history; and p = 0.01 for caregiver age and years of caregiving. Although caregivers reported benefit from the supportive approach offered by the multidisciplinary home care team, high levels of distress and associated burden were found, which might decrease their capacity to care for the person with dementia and their own health and well-being.

This paper examines the healthcare needs of community‐dwelling older people living in Porto, Portugal, diagnosed with moderate or severe dementia, linked to functional dependency, cognitive decline, limitations in the activities of daily life, and frailty levels. A sample of 83 participants was recruited. Data were collected between 2013 and 2017. A sociodemographic questionnaire, the Clinical Dementia Rating (CDR), the Barthel Index (BI), the Lawton and Brody Instrumental Activities of Daily Living (IADL) Scale, and the Edmonton Frail Scale (EFS) were used. A set of 26 healthcare needs was defined to support the assessment. The Pearson chi‐square or Fisher's exact test (as appropriate) was used to examine the association of the needs (unmet and met) with the levels of dementia and frailty. Participants were diagnosed previously with moderate or severe dementia and benefited from a structured home‐care program. There was a high number rated as “severe dementia,” “fully dependent,” “severely or fully dependent in the activities of daily living (ADL),” and “severe frailty.” There were statistically significant differences among needs identified in people with moderate or severe dementia and moderate or severe frailty. The most prevalent healthcare needs in the sample were food preparation, medication/taking pills, looking after their home, toilet use, sensory problems, communication/interaction, bladder, bowels, eating and drinking, memory, sleeping, and falls prevention. In particular, the study identifies a set of needs that are present simultaneously in both frailty and dementia stages. This study underlines that despite well‐structured home‐care programs for people with dementia, unmet health needs remain. Timely healthcare needs assessment may help professionals to avoid fragmented care and to tailor quality‐integrated interventions, including the emotional and psychological balance of the caregiver.

To determine the impact of the Caledonian Development Model, designed to promote evidence-based practice. The model features practice-development activities, benchmarking, knowledge pooling and translation through membership of a community of practice and a virtual college. Twenty-four nurses, from 18 practice sites formed three communities of practice, each selecting evidence-based guidance to implement. A modified group supervision framework empowered nurses to champion local implementation. Outcomes were determined at 6 months. Eighty per cent of the patient-related criteria and 35% of the facilities criteria were achieved. The Revised Nursing Work Index indicated these nurses experienced greater autonomy (P = 0.019) and increased organizational support (P = 0.037). Focus groups revealed a deepening organizational support for the initiative over time, illuminated work-based learning challenges and overall enthusiasm for the approach. Implementation of the model effectively promoted evidence-based practice, most notably at the level of the individual patient. Time and budgetary constraints necessitate smart, value for money approaches to developing evidence-based practice and improved care standards. This work demonstrates an effective model that strikes a balance between individual and group learning, virtual and real-time activities, coupled with resource pooling across organizations and sectors.

This article presents an integrative literature review of the experience of dementia care associated with the extended palliative phase of dementia. The aim was to highlight how dementia is defined in the literature and describe what is known about the symptomatology and management of advanced dementia regarding the needs and preferences of the person with dementia and their family carer/s. There was no consistent definition of advanced dementia. The extended palliative phase was generally synonymous with end-of-life care. Advanced care planning is purported to enable professionals to work together with people with dementia and their families. A lack of understanding of palliative care among frontline practitioners was related to a dearth of educational opportunities in advanced dementia care. There are few robust concepts and theories that embrace living the best life possible during the later stages of dementia. These findings informed our subsequent work around the concept, ‘Dementia Palliare’.