Category: Dementia – Supporting Carers

Objectives: Resistiveness to care (RTC) refers to behavior problems that co-occur during assistance with activities of daily living (ADL). RTC are considered challenging, but are mostly studied in institutions with implications for patients and formal caregivers. RTC is associated with agitation, but agitation is considered a separate construct. Detection of RTC may be left out of common assessments of persons with dementia in studies of informal caregiving (e.g. global assessments of dementia behavioral symptoms, standard assessments of ADL function). This study examines how RTC (frequency and caregivers stress appraisals of RTC) is related to caregivers well-being. Conclusion: RTC is common in persons with dementia residing at home, and RTC has more negative association with informal caregivers well-being than assistance with ADL. Adding RTC frequency and appraisal items to standard ADL measures may better estimate caregivers’ needs and risk, and identify modifiable environmental features by assessing behavioral symptoms in context.

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The objective of this review was to assess the effectiveness of interventions delivered by telephone, internet or combined formats to support carers of community dwelling people living with Alzheimer’s Disease, vascular dementia or mixed dementia. English language literature published up to 2016 was searched. When considering the ratio of number of studies to successful outcomes, combined telephone and internet delivery of multicomponent interventions demonstrated relatively more positive outcomes in reducing depression, burden and increasing self-efficacy than telephone alone or internet alone. Further studies are necessary to evaluate the effectiveness of interventions targeted at specific types of dementia and to understand which components of interventions are most effective.

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https://www.clinicalkey.com/#!/browse/toc/1-s2.0-S0167494316X00039/null/journalIssue

The need for specialist nurses in Dementia awareness is on the increase but, in many cases, tangible improvements in care are yet to be seen. As specialist nurse roles have improved patient care and outcomes in other specialties–most notably cancer care–this article looks at their impact and asks whether there is a need for such roles in dementia care, to what extent patient and carer experiences might be improved, and how health and social care might come together with policy makers and third-sector organisations to secure positive change.

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Patients with Alzheimer’s disease (AD) need early caregiver support. Caregivers often have poor health, but usually do not have time to seek medical advice for their own conditions. Patients’ physicians, who are frequently the sole medical practitioner caregivers contact regularly, have an important function in recognizing family caregivers’ burdens. The current study investigated to what extent medical practitioners recognized family caregivers’ problems. In a two-staged survey in neurology outpatient care, caregivers of patients with mild or moderate AD were enrolled and assessed by physicians regarding their physical and mental burden, as well as need for help and advice about AD. Subsequently, caregivers’ mental health was evaluated in a comprehensive diagnostic interview by blinded psychologists. Overall, 73.7% of caregivers had at least one somatic condition and 43.7% had clinically relevant depressive symptoms (of these, 37.5% met criteria for major depression). The findings suggest that the burden of a substantial proportion of affected family caregivers is overlooked.

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The need for collaborative working between health, social care and the third sector is greater than ever. The District Nursing service is central to initiating and leading such collaborative developments. This article is an example of how a new third sector service can complement and share the care and support for people with dementia and their families, living in the community. It highlights what people with dementia want, how this underpinned the development of this new service and what such a service can offer, not only for the individual person with dementia but also their family/carers. It also highlights the value of working in partnership to meet the changing needs of individuals and their families/carers.

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Caring for a family member with dementia is stressful, and carers from all backgrounds often feel overwhelmed and under-supported. Professional and family carers’ perceptions of the challenges and satisfactions of caring are influenced by culturally derived expectations. However, experiences of caring often differ from stereotypical norms. Experiences of carer stress and beliefs about the nature and extent of support that can be expected from social networks and statutory services may differ between cultural groups in the UK, but sensitive advice, information, and emotional and practical support are universally required. Transcultural comparisons reveal similarities between carers’ needs and enable identification of values-based culturally congruent recommendations that nurses can use to promote black and Asian minority ethnic carers’ confidence and wellbeing. This article, based on practice experience and a literature review, explores the effect of caring among different cultural groups and offers recommendations for culturally congruent interventions to support carers. It provides evidence-based guidance to enable nurses to meet their responsibilities for transcultural working, as laid out in the Care Act 2014. A scenario illustrates recommendations for practice.

Nursing older people (Follow this link if you have an Athens password). Alternatively contact the UHSM Academy Library for a copy of the article or call 0161 291 5778)

When a person with dementia (PWD) has lost the ability to make treatment decisions, clinicians often rely on family carers to know and articulate these preferences with assumed accuracy. This study used the Life Support Preferences Questionnaire (LSPQ) to explore whether family carers’ choices show agreement with the end of life care preferences of the person with dementia for whom they care and what factors influence this.

PLoS ONE (Follow this link if you have an Athens password). Alternatively contact the UHSM Academy Library for a copy of the article or call 0161 291 5778)

Many people with dementia are cared for by family members. Family carers often feel bound to support the person with dementia at the expense of their own needs, which can be neglected. They often experience distress when making decisions, especially over ethical dilemmas when their own interests and those of the person being cared for conflict. This paper presents a case study approach to consider best interests decision making for families affected by dementia. In the case study, a carer is supporting his father to remain living at home although he feels this unsafe and the demands of this cause tension with his family and affect his performance at work.

British journal of community nursing (Follow this link if you have an Athens password). Alternatively contact the UHSM Academy Library for a copy of the article or call 0161 291 5778)

People with dementia are more likely to experience a decline in function, fall or fracture when admitted to hospital than the general hospital population. Informal carers’ views were sought on the care their relative with dementia received in hospital. Participants were concerned about a lack of essential nursing care, harmful incidents, a decline in patient function, poor staff communication and carers’ needs not being acknowledged. Care can be improved through further training, more effective communication, consideration of the appropriate place to care for people and more use of carers’ knowledge.

Nursing Times (Follow this link if you have an Athens password). Alternatively contact the UHSM Academy Library for a copy of the article or call 0161 291 5778)

Inadequate care has been identified for those with dementia at all stages, from pre-diagnosis to end-of-life care. Nationally, two levels of initiatives are evolving: basic awareness skilling of frontline care staff and changing services at the strategic level. Senior clinical staff have the potential to fill the gap between the two levels and drive speedier service change.

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