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Section 1
BACKGROUND AND CONTEXT Dementia is an umbrella term which is used to describe a condition which may be caused by a number of illnesses in which there is progressive decline in multiple areas of function including; decline in memory, reasoning, communication skills and in the ability to carry out daily activities (1). The number of people living with dementia in Ireland today is estimated to be around 48,000 and this number is set to treble by 2045 (2). Dementia is a chronic, life limiting condition (3–5). People with dementia have a unique set of care needs which include; a progressive cognitive impairment, diminishing capacity, communication difficulties, possible responsive behaviours and a prolonged illness trajectory leading to uncertainty in relation to prognosis (1,6). People dying with and or/from dementia are therefore a particularly vulnerable group who require staff to have knowledge, skills, competence and confidence in both dementia and palliative care (7). Palliative dementia care involves supporting the person with dementia and their family to address and relieve the pain, distress and discomfort associated with advancing dementia and inviting them to participate in making decisions about future care needs (8). Providing this care and comfort presents services with a significant challenge as each person’s journey through dementia is unique with huge variability in the length of the final phase, difficulties in communication and a lack of awareness about the terminal nature of dementia (5,9). This is often compounded by staff lacking basic knowledge, awareness and skills in supporting people with dementia (1,4). It is recommended that palliative care principles are introduced in the person’s care early on, ideally soon after diagnosis when the person can meaningfully engage in discussions about their future care (3,8,9). As illustrated, there has been growing recognition of the complexities involved in providing end-of- life care for people with dementia in the literature; however, there is a notable void of practice guidelines to support healthcare staff in delivering excellence in end- of-life care for people with dementia. In order to support staff in meeting the palliative care needs of people with dementia, there was a call for the development of practice guidelines for the Irish context (8,10–12). In 2013, the Irish Hospice Foundation (IHF) embarked on a three year programme entitled Changing Minds: Promoting excellence in end-of-life care for people with dementia. The aim of this programme is to enable more people, particularly those living with dementia to live and die with dignity at home or in residential care settings. The programme seeks to achieve the following: • Ensure that palliative care for people with dementia is prioritised and developed in all care settings and more people are supported to be able to die well at home. • Better end-of-life care in residential care settings for older people, with a particular focus on people with dementia. • Increased public discourse on death and dying, with a focus on those with dementia engaging in early advance planning. The programme has six projects, one of which has a dementia specific focus. The overall aim of this dementia specific project is to develop and adapt practice tools and service models for people with dementia. The project committed to develop a suite of guidance documents in order to support
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Facilitating discussions on future and end-of-life care with a person with dementia
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