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

Cost-effectiveness of physical activity in Alzheimer’s disease

This study explores the cost-effectiveness of a supervised moderate-to-high intensity aerobic exercise programme in people diagnosed with Alzheimer’s disease (AD) and estimate incremental cost-effectiveness ratios (ICER) using participant-reported and proxy-reported measures of health-related quality of life (HRQoL) | BMJ Open

Interventions: Control group received treatment as usual. The intervention group performed 1 hour of supervised moderate-to-high intensity aerobic exercise three times weekly for 16 weeks.

Primary and secondary outcomes measures: Different physical, functional and health measures were obtained at inclusion (baseline) and 4 and 16 weeks after. HRQoL (EuroQol-5 Dimensions-5 Levels/EQ-Visual Analogue Scale) was reported by the participants and the primary caregivers as proxy respondents. Differences in HRQOL as reported by the participant and caregiver were explored as were different values of caregiver time with respite from care tasks.

Results: The intervention cost was estimated at €608 and €496 per participant, with and without transport cost, respectively. Participants and caregivers in the intervention group reported a small, positive non-significant improvement in EQ-5D-5L and EQ-VAS after 16 weeks. The ICER was estimated at €72 000/quality-adjusted life year using participant-reported outcomes and €87000 using caregiver-reported outcomes.

Conclusions: The findings suggest that the exercise intervention is unlikely to be cost-effective within the commonly applied threshold values. The cost of the intervention might be offset by potential savings from reduction in use of health and social care.

Full reference: Sopina, E. et al. (2017) Cost-effectiveness of a randomised trial of physical activity in Alzheimer’s disease: a secondary analysis exploring patient and proxy-reported health-related quality of life measures in Denmark. BMJ Open. 7:e015217.

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

puzzle-654963_960_720.jpg

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

Dementia Assessment and Referral to GPs: DeAR-GP (NICE / HIN)

Dementia and Elderly Care News

Summary

It was already known that between 75% – 89% of care home residents have dementia, but many of these persons do not receive a diagnosis. The Health Innovation Network (HIN) worked with five care homes to design the Dementia Assessment Referral to GP (DeAR-GP) tool.

DeAR-GP is a case finding tool which assists care workers in care homes to identify and support residents showing signs of dementia or confusion. The aim is to achieve better referrals to GPs or other healthcare professionals for prompt review and post-diagnostic support.

Full Text Link

Reference

Dementia Assessment Referral to GP (DeAR-GP). [Online]: National Institute for Health and Care Excellence (NICE) and Health Innovation Network (HIN), June 2017.

Related comment:

Full Text Link(Note: This article requires a suitable Athens password, a journal subscription or payment for access).

Reference

de Waal, H. [and] Jackson, A. (2016). DeAR-GP aids referrals. Nursing Older People. May…

View original post 145 more words

“I’m Still Here”: Personhood and the Early-Onset Dementia Experience

The current study examined the lived experience from the point of view of four adults younger than 65 with dementia, particularly how they perceive their personhood | Journal of Gerontological Nursing

mechanical-2033446_960_720.jpg

Using interpretative phenomenological analysis as the research approach, findings revealed that the EOD experience can be incorporated into six themes: (a) A Personal Journey, (b) Navigating the System, (c) The Stigma of Dementia, (d) Connecting to the World, (e) A Story Worth Telling, and (f) I’m Still Here. Participants’ stories, as presented via these six thematic threads, reveal that individuals with EOD can have a strong sense of personhood. Findings are discussed and situated within the current EOD body of knowledge, and new knowledge is presented. Implications for practice and recommendations for future research are discussed.

Full reference: Sakamoto, M.L. et al. (2017) “I’m Still Here”: Personhood and the Early-Onset Dementia Experience. Journal of Gerontological Nursing. 43(5) pp. 12-17

Nurses’ experiences of pain management for people with advanced dementia approaching the end of life

Pain management in end-stage dementia is a fundamental aspect of end-of-life care; however, it is unclear what challenges and facilitators nurses experience in practice, whether these differ across care settings, and whether training needs to be tailored to the context of care | Journal of Clinical Nursing

hands-2257419_960_720.jpg

Aims and objectives: To explore hospice, acute care and nursing home nurses’ experiences of pain management for people with advanced dementia in the final month of life. To identify the challenges, facilitators and practice areas requiring further support.

 

Conclusions: Achieving pain management in practice was highly challenging. A number of barriers were identified; however, the manner and extent to which these impacted on nurses differed across hospice, nursing home and acute care settings. Needs-based training to support and promote practice development in pain management in end-stage dementia is required.

Relevance to clinical practice: Nurses considered pain management fundamental to end-of-life care provision; however, nurses working in acute care and nursing home settings may be undersupported and under-resourced to adequately manage pain in people dying with advanced dementia. Nurse-to-nurse mentoring and ongoing needs-assessed interactive case-based learning could help promote practice development in this area. Nurses require continuing professional development in pharmacology.

Full reference: De Witt Jansen, B. et al. Nurses’ experiences of pain management for people with advanced dementia approaching the end of life: a qualitative study. Journal of Clinical Nursing. 26,(9-10) pp. 1234–1244