Community palliative care nurse experiences and perceptions of follow-up bereavement support visits to carers.

Community (district) nurses (CNs) are well positioned to provide follow-up home visits to bereaved families and carers of their recently deceased palliative clients. An Australian survey of CN's (n = 58, response rate 29%) described their experiences of bereavement support visits, perceptions of their role in bereavement care and their professional support needs. Although positive experiences were commonly reported, with 95% of participants considering bereavement follow-up visits as consistent with their role, 53% found the visits difficult for reasons such as the nurse or client not understanding the purpose, the CN's excessive personal identification with the client's situation, the emotional intensity of visits, and lack of confidence or skills despite prior training. The nature and quality of the CN's prior relationship with the bereaved family was an important determinant of the visits' success. Results highlight the value of bereavement support visits, while identifying professional development needs. Managing emotionally intense episodes should receive priority in preparing CN's for this challenging role.

Evaluation of an information booklet for caregivers of people with dementia: an Australian perspective.

The need for improved communication around end-of-life issues has been identified in cancer care. However, caregivers assisting those with dementia have been given scant attention. This study investigated the application of a new dementia information booklet for family caregivers, accessing those that were both community-based and linked to a residential aged-care facility through the distribution of 672 information booklets. This occurred via 14 dementia advisory services and 48 residential aged-care facilities throughout New South Wales, Australia. A total of 233 carers (33%) completed the booklet questionnaire evaluation. The descriptive statistics indicated that most carers found the booklet useful and thought that the booklet should be freely available to them. Almost half of the carers said that they wanted to receive the information at the time of, or soon after, the diagnosis of dementia. Only a small group of respondents considered the information to be confronting. The reported anxiety was thought to be part of a larger issue of dementia education and dealing with loss and not specifically related to the booklet itself.

Challenges for professional care of advanced dementia.

Qualitative methodology based on action research identified challenges when caring for persons with advanced dementia, as perceived by key professional providers. Data collection was via five focus groups (total n = 24) and 20 follow-up individual interviews. Participants included palliative care, aged care and dementia specialist nurses, medical specialists from an area health service, residential aged care staff and general medical practitioners. Responses emphasized the need for improved knowledge and skills, and clearer policy. Concerns included accurate assessment, especially of pain, owing to the inability of people with advanced dementia to communicate their symptoms. Assessment, managing physical and behavioural symptoms, and communicating with family presented as further challenges. Conclusions are that the need for a palliative approach to care in advanced dementia should be recognized. Aged care staff can deliver palliative care to people with advanced dementia only if the staff receive relevant education and training beyond their generalist competencies.

Palliative care for end-stage dementia: a discussion of the implications for education of health care professionals.

The increasing burden of chronic disease demands that palliative care clinicians address the needs of patients with non-malignant disease. This discussion document seeks to address some of the challenges to providing palliative care for end-stage dementia (ESD) and the need for skill enhancement in key providers of care. In spite of the intent, there is an apparent lack of appropriate, co-ordinated and comprehensive palliative care available for these individuals and their families. There is an absence of well-articulated models to assist health care providers of ESD clients. It would appear that the development and evaluation of guidelines, implementation of education programs and collaborative associations between palliative and aged-care providers of care are key strategies to facilitate palliative care for ESD clients.