RESUMEN
OBJECTIVES: Historically, dementia has not been recognised as a life-limiting condition or one that may benefit from a palliative approach to its care. There are many challenges in providing palliative and end-of-life care to this group of people, some of which may be reduced through advance care planning (ACP) to support people with dementia to have a greater influence on their care at end of life. ACP has been defined as a process of discussing and recording of wishes, values and preferences for future care and treatment held between an individual, family members and their care provider(s) that takes effect when the person loses capacity. The objective of this project was to involve people with dementia and their family carers in co-design of ACP guide and template to prepare for further study related to communication processes in ACP. METHODS: A user-centred design process cycle of development and review was undertaken by Dementia UK which involved people with dementia, family carers, Admiral Nurses and other key stakeholders in developing an ACP guide and template. RESULTS: Nine cyclical stages were undertaken to achieve the outcome of an ACP guide and template. CONCLUSION: Co-production using a user-centred design approach offers a structured and inclusive approach to developing ACP materials.Authors.
Asunto(s)
Planificación Anticipada de Atención/organización & administración , Cuidadores/organización & administración , Demencia/terapia , Cuidado Terminal/organización & administración , Familia/psicología , Humanos , Cuidados Paliativos/organización & administraciónRESUMEN
Education of health and social care professionals is essential in preparation to confidently and effectively support families affected by dementia to undertake advance care planning. This article describes a training needs analysis of Admiral Nurses, dementia specialists, in facilitating advance care planning for future care. METHODS: A questionnaire survey was completed by Admiral Nurses attending end-of-life care masterclasses in 2017 and 2018. Both quantitative (years registered as a nurse, years as an Admiral Nurse and subjective level of confidence in completing advance care plannings) and qualitative data (interventions perceived to increase confidence) were collected. FINDINGS: There were 75 completed responses (two incomplete returns). There was no correlation between levels of confidence and years registered as a nurse. However, there was a small positive correlation between confidence and number of years as an Admiral Nurse (r = 0.23; p < 0.05). Themes identified qualitatively to enhance practice were advanced communication skills, supervised practice, resources to frame conversations and a guide and template for advance care planning. CONCLUSION: Although Admiral Nurses are specialists in dementia, several educational initiatives could be employed to better enable them to support advance care planning for families affected by dementia. This training needs analysis is contributed towards developing an educational intervention for Admiral Nurses to improve advance care planning support.
RESUMEN
BACKGROUND: Most deaths occur in people over the age of 65 years, yet there is widespread evidence that older people have inequitable access to good palliative and end-of-life care. For people with dementia, there are further barriers to receiving palliative care. Identifying when older people with dementia are reaching the end of their lives is not straightforward. A palliative approach to care has been recognised as key in UK practice guidance; the National Institute of Health and Care Excellence recommends that, from diagnosis, people living with dementia should be offered flexible, needs-based palliative care that takes into account how unpredictable dementia progression can be. However there are still wide gaps in care in the dementia pathway, largely because commissioning is fragmented. METHOD: This paper describes the Admiral Nurse case management approach to palliative care by benchmarking its practice against the European Association of Palliative Care white paper recommendations for palliative care in dementia.
Asunto(s)
Benchmarking , Demencia/enfermería , Enfermería de Cuidados Paliativos al Final de la Vida/normas , Proceso de Enfermería/normas , Cuidado Terminal/normas , Anciano , Anciano de 80 o más Años , Femenino , Servicios de Salud para Ancianos , Humanos , Masculino , Medicina Estatal , Reino UnidoRESUMEN
Advance care planning (ACP) is a structured discussion about a person's wishes and thoughts for the future, and is recognised as a vital part of good care at the end of life ( Department of Health 2008 , Royal College of Physicians et al 2009 , General Medical Council 2010 ).