title: Challenges for professional care of advanced dementia.
abstract: 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.
authors.affiliation: School of Nursing and Midwifery, College of Social and Health Sciences, University of Western Sydney, Sydney, Australia. e.chang@uws.edu.au
authors.forename: Esther
authors.initials: E
authors.lastname: Chang
authors.forename: John
authors.initials: J
authors.lastname: Daly
authors.forename: Amanda
authors.initials: A
authors.lastname: Johnson
authors.forename: Kathleen
authors.initials: K
authors.lastname: Harrison
authors.forename: Sally
authors.initials: S
authors.lastname: Easterbrook
authors.forename: John
authors.initials: J
authors.lastname: Bidewell
authors.forename: Heather
authors.initials: H
authors.lastname: Stewart
authors.forename: Michael
authors.initials: M
authors.lastname: Noel
authors.forename: Karen
authors.initials: K
authors.lastname: Hancock
mesh_terms: D032722:Advance Care Planning; D000368:Aged; D001291:Attitude of Health Personnel; D002983:Clinical Competence; D003144:Communication Barriers; D003704:Dementia / Q000150:complications / Q000517:prevention & control* / Q000523:psychology; D005190:Family / Q000523:psychology; D005194:Family Practice / Q000458:organization & administration; D017144:Focus Groups; D005851:Geriatric Nursing / Q000458:organization & administration; D006801:Humans; D020380:Needs Assessment / Q000458:organization & administration*; D009517:New South Wales; D009730:Nursing Assessment; D009735:Nursing Homes / Q000458:organization & administration; D015404:Nursing Methodology Research; D010166:Palliative Care / Q000458:organization & administration; D010348:Patient Care Team / Q000458:organization & administration*; D036301:Qualitative Research; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires