Dementia

Even though palliative care of dementia and care at home are key NHS priorities, services that set out specifically to support palliative care of dementia at home are virtually non-existent. We studied a novel service that has supported many people with advanced dementia at home through till death. Key factors for success include the right equipment, expertise around relevant medication, food, and social care needs, as well as understanding and support for funding care commissioning and informal care. The study revealed blockages to accessing support as a result of poor understanding of the needs of advanced dementia care as well as organizational prejudice. We demonstrate that good, home based palliative care of dementia can be achieved with very positive outcomes. Bereavement may be helped by the process of caring at home till death. Given that the Audit Commission has cited home care of advanced dementia as good value for money, it is of grave concern that services to support people with advanced dementia at home are not available.

This article describes the development of a locally based project funded by the BigLottery for 5 years from May 2008 to support five families at any one time caring for a relative with late stage dementia at home. The outcomes centre on improving the well-being of both the person with dementia and their caregivers. The assumption is that the principles of palliative care that have so sensitized the end of life care for people with cancer can be applied to improve the lot of people with dementia and their caregivers. Development of the project therefore entailed bringing together staff across dementia care, palliative care practitioners and crucial generalist community staff, such as GP's and District Nurses. A team with representation from these various professionals and care staff is now up and running to pilot a cross cutting service to meet the particular needs of people with late stage dementia and their families. The funding from the lottery includes additional respite care, training and consultancy. The project is small enough to enable experimentation and the design of a pathway to effectively utilize the knowledge and skills of the different practitioners involved. The scale of the project makes it possible to show how we can transcend the current underdevelopment and fragmentation of community services and help families who wish to do so, to care for their relatives at home.

Drawing on the experience of looking after 50 patients with dementia, this paper describes a practical approach by one GP to making a difference for people with dementia in care homes especially at the end of life. Included is the use of advance care plans and enhanced annual reviews drawing on GSF prognostic indicator guidance. Using case studies, the following topics are discussed: pain assessment, end of life care, emergency situations, hospital admission avoidance, swallowing difficulties, acute agitation and cardiopulmonary arrest. The forms and protocols which have been developed to support decision making in these situations, along with details of the website on which they can be found, are discussed. The potential benefits of significant event meetings and a GP practice to care home alignment model are also outlined.

The number of persons diagnosed with and dying from dementia continues to climb. Research corroborate that persons dying from dementia receive poor end of life care including the use of procedures or tests with little or no benefit, un- or undertreated physical and psychological symptoms, and futile care. This is in contrast to the patient's perspective on quality end of life care — adequate pain and symptom management, avoidance of prolongation of dying, achieve a sense of control, relieve burden, and strengthening relationships with loved ones. Hospice, initially developed to improve the end of life care for persons dying from cancer, represents an existing care model that can bridge these differences in experiences and wishes. Expansion of hospice services for persons dying from dementia may be limited by a number of obstacles that require consideration such as difficulties with prognosis, misconceptions by providers and families about the dying process in dementia, reimbursement issues, and regulatory oversight. However, a thoughtful and proactive approach can overcome these barriers, support hospice utilization, and bring about a more humane death for dementia patients and their families.

This paper outlines the development of an advance care planning service, in partnership with general practitioners, specialists and facility staff that supports Nursing Home (NH) residents with dementia and their families. The aim of the service is to put a process in place whereby treatment options for residents, who have lost decision-making ability, can be considered in advance of any further episodes of illness. A 10 step plan was developed to implement Advance Care Planning within high level residential aged care facilities. Issues that arose during the course of the project are also discussed. The legal context for substitute decision-making is explained. Issues such as when to have these conversations, how to approach families, are discussed

This paper proposes a new, alternative approach and setting for end-stage dementia patients with Aminoff Suffering Syndrome (ASS) that could pertain to the Israeli setting and could possibly also be acceptable in other countries. Short hospitalization periods of approximately 1 month and treatment in Relief of Suffering End-of-Life with Dementia Units may be a new palliative approach and present a possible solution for coping with the horrendous burden of the suffering of dementia patients, their families, and the medical and nursing staff. Aminoff Suffering Syndrome (ASS) in advanced dementia is the proposed symptomatology and pathological entity that is characterized by a high Mini Suffering State Examination (MSSE) scale score, <6 months survival, irreversible and intractable aggravation of suffering and medical condition until demise.

Although two thirds of people with dementia live in the community, a recent report from the Alzheimer's Society concluded that current health and social care systems are failing to support people with dementia and their families to continue to live at home, despite the fact that family carers of people with dementia save the UK over £10 million a year (Alzheimer's Society, 2007). If there are few examples of innovative care packages within dementia care, research evaluating such new approaches is even more limited (Robinson et al., 2005; Sampson et al., 2006). This section of the Dementia journal contains some examples of projects which have the potential to improve end of life care for people with dementia and their families.

Many people want to be able to plan ahead, so that if in the future they cannot make decisions or do things, their wishes will be known. This is called Advance Care Planning (ACP). Although it is part of official NHS policy (NHS End of Life Care Planning), ACP is hardly ever done, and it may become more difficult once a person has memory problems. In the UK, there is very little research into ACP. By the time someone has signs of dementia, families often become involved. We are uncertain how this affects ACP and the views of the person with dementia, particularly with the new Mental Capacity Act which allow families to comment on health, as well as financial, issues. Our study will be exploring the area of ACP, especially in dementia, by

• looking at the experience of other countries through a systematic review of the existing literature;

• finding out what people who have carried out ACP in this country think through interviews and focus groups;

• considering what factors might help professionals to encourage the process of ACP in practice; and

• looking at how ACP might be done better for people with dementia.

The ultimate aim of our study is to produce guidance on ACP for both people with dementia, their families and health care professionals.

This paper reports on the background and design of an innovative study seeking to develop and test a dementia specific approach to palliative care for older people in care homes, entitled Evidence-based interventions in dementia towards the end of life (EVIDEM EoL). The study uses a two-phase prospective design. Phase I intends to explore and document characteristics and support needs for people with dementia in care homes towards the end of life. Data from phase I informs phase II, the development and testing of a dementia specific education and support tool for palliative care in care homes. This paper reports on the study's background and phase I design. The study is part of the EVIDEM research programme (Evidence-based Interventions in Dementia) (www.evidem.org.uk).

The St. Christopher's Hospice Palliative Care in Dementia Project, funded for 3 years by the King's Fund, aims to investigate the palliative care needs of patients with advanced dementia and their families; to clarify the role of specialist palliative care for this patient group; and to examine the usefulness of one model of working. This interim report outlines findings from the first 50 patients taken on by the project. Early results indicate that both patients and their carers have a high level of unmet need. The model of care chosen for this project appears to meet many of these needs, and appears to be both cost efficient and effective in terms of improving end of life care for dementia patients and their carers.