Advance Care Planning for people with dementia

My future wishes: Advance Care Planning (ACP) for people with dementia in all settings | NHS England | Alzheimer’s Society | tide

future wishes
Image source: http://www.england.nhs.uk

The guide provides signposting, information and support for colleagues in health, social and community care settings, around advance care planning for people living with  dementia. It identifies key actions from the point of an initial diagnosis of dementia through to the advanced condition, in order to highlight and prompt best practice irrespective of care setting.

It also considers situations where it has not been possible to initiate an ACP / future wishes conversation early and provides some tips on how to manage this.

The aim of this resource is to help practitioners, providers and health and social care commissioners:

  • create opportunities for people living with dementia to develop an ACP through
    initiating and / or opening up conversations;
  • ensure advance care planning is fully embedded in wider inclusive, personalised care and support planning for dementia;
  • ensure people living with dementia have the same equal opportunities as those
    diagnosed with other life limiting conditions / diseases, in terms of accessing palliative care services / support.

Full document: My future wishes: Advance Care Planning (ACP) for people with dementia in all settings 

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Study shows dying at home more comfortable than hospital

Dying comfortably in very old age with or without dementia in different care settings – a representative “older old” population study | BMC Geriatrics | published online 5th  October 2017

A study from the University of Cambridge in the UK found that elderly people were four times more likely to die comfortably if their last days were spent at home or in a “care home”—defined to be either a residential care home or a nursing home—than if they were in a hospital.

Jane Fleming, a senior research associate at Cambridge, and colleagues, reported in BMC Geriatrics about their retrospective analysis of data from 180 deceased participants, ages 79-107 years. Relatives and caregivers were asked about the patients’ comfort level. The researchers learned only 10% of all participants died without pain or symptoms of distress.

Full document available at BMC Geriatrics

 

Family visits in care homes

Bruce Walmsley & Lynne McCormack | Severe dementia: relational social engagement (RSE) during family visits | Aging & Mental Health Vol. 21 , Iss. 12,2017

Abstract:

Objective: Few studies have utilised observation to investigate retained awareness when individuals with severe dementia interact with family members. Seeking evidence of retained awareness in those with severe dementia, interactive family visits in care homes were observed and analysed.

Method: Five family groups (14 individuals) completed 10/15-minute video recorded family interactions. Speech and non-speech interactions were analysed using Thematic Analysis.

Results: One superordinate theme: Distinctive family bonds; overarched two subthemes, in-step and out-of-step describing positive and negative familial interactions. In-step interactions revealed family groups reciprocating social support, having fun together, and willing to go on the ride together. Out-of-step interactions characterised social frustration, non-reciprocity, and sidelining of members with dementia. Although awareness fluctuated, complex awareness was observed in the speech/non-speech expressions of those with dementia. In response, visitors appeared to treat those expressions and behaviours as understandable. Observed outcomes were out-of-step when visitors sought to retain the familiar and in-step when visitors sought to optimise all communication possibilities.

Conclusion: Video recorded family interactions and analysis revealed: (a) awareness was retained in the participants with severe dementia beyond assessed levels; and (b) Relational Social Engagement (RSE) occurred within family groups despite positive or negative interactions. Implications are discussed.

Marie Curie Research Conference Abstracts 2017

Selected abstracts from the conference:

  • 14 Managing uncertainty in care for people with dementia at the end of life: the use of heuristics

Do Not Attempt Resuscitation Orders(DNAR) and their contemporary counterparts are cornerstones of End of Life care and as such, of importance within medical education. Previous research indicates the need for a better understanding of patient and physicians perceptions of DNAR topics.

Davies, N. et al. (2017) 14 Managing uncertainty in care for people with dementia at the end of life: the use of heuristics. BMJ Supportive & Palliative Care. Vol. 07 (Issue 03) p. A352.

  • 21 Exploring the effectiveness of a mindfulness-based intervention for staff in a palliative care setting

Palliative care staff engage in emotional and stressful work; however, research is yet to offer any insights as to what types of psychosocial intervention can effectively improve staff psychological well-being (Hill, Dempster, Donnelly, & McCorry, 2016). This research aims to evaluate the effectiveness of a Mindfulness-Based Intervention (MBI), which was condensed to make it more feasible for staff to attend, to improve the psychological well-being of palliative care staff.

Hill, R.C. et al. (2017) 21 Exploring the effectiveness of a mindfulness-based intervention for staff in a palliative care setting. BMJ Supportive & Palliative Care. Vol. 07 (Issue 03) pp. A354-A355.

  • 28 Do not attempt resuscitation: university of aberdeen student perspectives

Do Not Attempt Resuscitation Orders(DNAR) and their contemporary counterparts are cornerstones of End of Life care and as such, of importance within medical education. Previous research indicates the need for a better understanding of patient and physicians perceptions of DNAR topics.

Koshias, A. et al. (2017) 28 Do not attempt resuscitation: university of aberdeen student perspectives. BMJ Supportive & Palliative Care. Vol. 07 (Issue 03) pp. A357-A358

 

 

 

 

Better palliative care for people with a dementia

Dementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such | BMC Palliative Care

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Image source: Susan Lockhart – Wellcome Images // CC BY-NC-ND 4.0

Background: People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so.

Main body: An interdisciplinary workshop on “Palliative Care in Neurodegeneration, with a focus on Dementia”, was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify ‘gaps’ for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended.

Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities.

Conclusions: The care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area.

Full reference: Fox, S. et al. (2017) Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research. BMC Palliative Care. Vol. 17 (no. 9)

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

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

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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