Dementia Caregiver Grief and Bereavement

Alzheimer’s disease and related dementias make up the fifth leading cause of death for individuals of 65 years of age and older in the United States. Seventy percent of these individuals will die in long-term care settings | Western Journal of Nursing Research

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The aim of this integrative review was to examine and synthesize the evidence on grief and bereavement in Alzheimer’s disease and related dementias caregivers. This review identified five critical gaps in the existing evidence:

(a) a lack of ethnic and gender diversity among caregivers studied,

(b) limited use of valid instruments to study dementia caregiver grief and bereavement,

(c) no substantive research examining dementia caregiver grief and bereavement for caregivers whose family members die in long-term care,

(d) a lack of evidence examining the effect of hospice services on dementia caregiver grief and bereavement

(e) a lack of grief and bereavement interventions for dementia caregivers whose family members die in long-term care.

Full reference: Arruda, E.H. et al. (2017) Dementia Caregiver Grief and Bereavement: An Integrative Review. Western Journal of Nursing Research. Vol.  39 (no. 6) pp. 825-851

Management of long-term conditions and dementia: The role of the Admiral Nurse

As life expectancy increases so people often develop a range of conditions and disabilities in the years before death | British Journal of Community Nursing

Multimorbidity represents the most common ‘disease pattern’ found among the elderly and is characterised by complex interactions of co-existing diseases where a medical approach focused on a single disease does not suffice. People with dementia who also have other comorbidities do not always have their comorbid conditions managed as those without dementia which often lead to a high number of hospital admissions with longer lengths of stay and greater treatment costs. This case study presents the case management approach taken by Admiral Nursing in managing the complexities where there is comorbidity of a long-term condition and a diagnosis of dementia. By empowering the person and their carer with information and choices and through good case management and communication, people can be supported to live well and avoid inappropriate hospital admissions.

Full reference: Knight, C. & Harrison Dening, K. (2017) Management of long-term conditions and dementia: The role of the Admiral Nurse. British Journal of Community Nursing. Vol. 22 (no. 6)

Dementia training programmes for staff working in general hospital settings

Although literature describing and evaluating training programmes in hospital settings increased in recent years, there are no reviews that summarise these programmes | Aging & Mental Health 

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Objectives: This review sought to address this, by collecting the current evidence on dementia training programmes directed to staff working in general hospitals.

Results: Fourteen peer-reviewed studies were identified with the majority being pre-test post-test investigations. No randomised controlled trials were found. Methodological quality was variable with selection bias being the major limitation. There was a great variability in the development and mode of delivery although, interdisciplinary ward based, tailor-made, short sessions using experiential and active learning were the most utilised. The majority of the studies mainly evaluated learning, with few studies evaluating changes in staff behaviour/practices and patients’ outcomes.

Conclusion: This review indicates that high quality studies are needed that especially evaluate staff behaviours and patient outcomes and their sustainability over time. It also highlights measures that could be used to develop and deliver training programmes in hospital settings.

Full reference: Scerri, A. et al. (2017) Dementia training programmes for staff working in general hospital settings – a systematic review of the literature. Aging & Mental Health. Vol. 21 (no. 8) pp.783-796

Experiences and Needs of Relatives of People with Dementia in Acute Hospitals

The purpose of this meta-synthesis was to present an in-depth analysis of existing qualitative literature concerning experiences and needs of the relatives of patients with dementia in hospitals | Journal of Clinical Nursing

Background: Relatives are an important resource for the care of patients with dementia in hospitals. They provide necessary information about the patient and can support the patient’s care. Simultaneously, they are themselves vulnerable, having specific needs and experiences. A number of studies have been conducted that focus on the perspectives of the relatives. The synthesis of qualitative studies contributes to a more comprehensive understanding of recent study findings.

Results: Relatives of patients with dementia frequently experience a negative cycle of specific worries, negative feelings and resulting roles and functions in hospital due to negative care experiences.

Conclusions: Experiences of relatives are strongly influenced by the attitudes, expertise and communication that they receive from health professionals working in the hospital. The results clearly show how health professionals have the potential to break through the negative cycle and contribute to a more positive feeling about a patient’s hospital stay.

Relevance to clinical practice: Structured and individually planned involvement of the relatives during the hospital care seems to be a key aspect for improving the experiences for the relatives and the patients with dementia. Collaboration with the relatives needs to be valued and supported by the organisation. Also a professional and defined frame for this area of responsibility needs to be provided.

Full reference: Burgstaller, M. et al. (2017) Experiences and Needs of Relatives of People with Dementia in Acute Hospitals – A Meta-Synthesis of Qualitative Studies. Journal of Clinical Nursing. DOI: 10.1111/jocn.13934

 

Interventions to prevent cognitive decline & dementia

Evidence supporting three interventions that might slow cognitive decline and the onset of dementia is encouraging but insufficient to justify a public health campaign focused on their adoption | ScienceDaily

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Image source: NASEM

Cognitive training, blood pressure management for people with hypertension, and increased physical activity all show modest but inconclusive evidence that they can help prevent cognitive decline and dementia, but there is insufficient evidence to support a public health campaign encouraging their adoption, says a new report from the National Academies of Sciences, Engineering, and Medicine.  Additional research is needed to further understand and gain confidence in their effectiveness, said the committee that conducted the study and wrote the report.

Practical problems preventing people with dementia from living at home

Although the majority of people with dementia wish to age in place, they are particularly susceptible to nursing home admission | Geriatric Nursing

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Nurses can play an important role in detecting practical problems people with dementia and their informal caregivers are facing and in advising them on various ways to manage these problems at home.

Six focus group interviews (n = 43) with formal and informal caregivers and experts in the field of assistive technology were conducted to gain insight into the most important practical problems preventing people with dementia from living at home. Problems within three domains were consistently described as most important: informal caregiver/social network-related problems (e.g. high load of care responsibility), safety-related problems (e.g. fall risk, wandering), and decreased self-reliance (e.g. problems regarding self-care, lack of day structure).

To facilitate aging in place and/or to delay institutionalization, nurses in community-based dementia care should focus on assessing problems within those three domains and offer potential solutions.

Full reference: Thoma-Lürken, T. et al. (2017) Facilitating aging in place: A qualitative study of practical problems preventing people with dementia from living at home. Geriatric Nursing. Published online: 14 June 2017

Monthly announcement of national dementia diagnosis rate

Alistair Burns, NHS England’s clinical director for dementia has written to CCGs with an update on national priorities and the latest dementia diagnosis figures, for April 2017 | NHS England

The monthly CCG letters can be found below with the national dementia diagnosis rates alongside general updates on national priorities. Commissioners are asked to cascade this information to member practices.

Age-appropriate services for people diagnosed with young onset dementia

Andrea Mayrhofer et al. Age-appropriate services for people diagnosed with young onset dementia (YOD): a systematic review. Aging & Mental Health Published Online: 16 Jun 2017 

Background: Literature agrees that post-diagnostic services for people living with young onset dementia (YOD) need to be age-appropriate, but there is insufficient evidence of ‘what works’ to inform service design and delivery.

Objective: To provide an evidence base of age-appropriate services and to review the perceived effectiveness of current interventions.

Methods: We undertook a systematic review including all types of research relating to interventions for YOD. We searched PubMed, CINHAL Plus, SCOPUS, EBSCO Host EJS, Social Care Online and Google Scholar, hand-searched journals and carried out lateral searches (July–October 2016). Included papers were synthesised qualitatively. Primary studies were critically appraised.

Results: Twenty articles (peer-reviewed [n = 10], descriptive accounts [n = 10]) discussing 195 participants (persons diagnosed with YOD [n = 94], caregivers [n = 91] and other [n = 10]) were identified for inclusion. Services enabled people with YOD to remain living at home for longer. However, service continuity was compromised by short-term project-based commissioning and ad-hoc service delivery.

Conclusion: The evidence on the experience of living with YOD is not matched by research and the innovation needed to mitigate the impact of YOD. The inclusion of people with YOD and their caregivers in service design is critical when planning support in order to delay institutional care

Full document available here

Gap in health care for Alzheimer’s disease patients who live alone

46% of patients who are diagnosed with Alzheimer’s disease in Sweden live alone in their homes, in particular older women, researchers report | ScienceDaily

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Swedish researchers report in an article published in the Journal of Alzheimer´s Disease that 46% of patients who are diagnosed with Alzheimer´s disease in Sweden live alone in their homes, in particular older women.

The patients who live alone do not receive the same extent of diagnostic investigations and anti-dementia treatment as those who are co-habiting. On the other hand, they were treated more frequently with antidepressants, antipsychotics and sedative drugs.

According to recent statistics, the number of older people who live alone in their homes, especially women, is increasing in high income countries. When an older person is affected by dementia, such as Alzheimer´s disease, they may not have a close relative living with them, which may complicate the course of the disease. Dementia affects their memory and later can lead to their dependency on caregivers.

Gender effects on components of burden and depression among dementia caregivers

Objective: Previous literature has examined burden and depression predominately as unitary constructs in relation to dementia caregiving. No studies thus far have examined gender differences in the specific components of burden and depression in dementia caregivers. The current study examined whether empirically validated dimensions of caregiver burden differed by gender for dementia caregivers.

Methods: The sample consisted of 211 dementia caregivers enrolled in a longitudinal intervention study. Only baseline functioning was evaluated in this study. Levels of burden were assessed using the Zarit Burden Interview (ZBI), and levels of depression were assessed using the Center for Epidemiologic Studies Depression Scale (CES-D).

Results: Factor analysis revealed three facets of burden: impact of caregiving on the caregivers’ lives, guilt, and frustration/embarrassment, and four facets of depression: depressed affect, somatic activity, positive affect, and interpersonal feelings. Overall burden (p < .001) and impact of caregiving on the caregivers’ life (p < .001) were significantly higher in females. Overall levels of depression (p = .018), somatic and retarded activity (p = .018), depressed affect (p = .005), and positive affect (p = .012) were significantly higher in females.

Conclusions: Findings suggest that distressed male and female dementia caregivers experience caregiving differently. Results from this study could be used to identify gender-specific interventions related to subtypes of burden and depression to optimize quality of life for caregivers.

Sarah Pillemer, Jennifer Davis, and Geoffrey Tremont. Gender effects on components of burden and depression among dementia caregivers | Aging & Mental Health | Published online: 12 June 2017