Palliative care for older people - World Health Organization ...

initiated at an early stage in the illness to considerpersonal wishes. Although tools for assessing painand distress in this group exist, they require detailedand lengthy observation.Palliative care for people with dementia urgentlyneeds to be improved. Approaches could includeinterventions for agitation, constipation and pain,which may improve the quality of life, decrease thenumber of unnecessary investigations and reducecosts (Box 7.1).As the capacity of people with dementia to makedecisions for themselves declines with progression,informal caregivers find themselves having to makedifficult choices for those with dementia. Writteninformation can assist caregivers in knowing howbest to help the people in their care (Box 7.2).Nursing home staff and health care professionalsoften lack the specialized knowledge necessary forthe palliative support of older people with dementia.One challenge in particular is whether the nursingprofession and family doctors recognize these skillsas specialist, necessary and beneficial to the careof people with dementia, particularly in nursinghomes. Educational initiatives can raise awarenessand improve care (Box 7.3). Joint work betweengeriatric nursing, dementia specific care skills andpalliative care will improve all levels of care, as careprofessionals learn from each other.Box 7.1. Multidisciplinary guidelines to improve the palliative care of people in the terminal phase ofdementiaThe guidelines were developed in the United Kingdom in response to an audit showing that many peopledying with dementia suffered from such symptoms as pain, breathlessness and pyrexia. Nurses and physiciansworking in psychiatry for older people developed the guidelines together with pharmacy and palliative carestaff. The guidelines cover managing pain, constipation, dyspnoea, vomiting and agitation, the use of syringedrivers and oral care in this setting. They were implemented in a long-stay unit of a large psychiatric hospitaland resulted in a decrease in the prescribing of antibiotics in the last two weeks of life and an increase in theuse of analgesia, including opiates.Source: Lloyd-Williams & Payne (6).Box 7.2. A guide for caregivers of people with dementiaThis guide (7) was developed in Sherbrooke, Quebec, Canada in response to the needs of family caregivers formore information on the trajectory of disease, clinical issues, decision-making processes, symptom managementat the end of life in dementia, what to expect when the person is dying and grief. It aims to help decisionmakersto understand the risks and benefits of care options and to participate actively in decision-making.The guide is widely used in Quebec, with more than 10 000 copies printed in French and English. It has beenwell accepted by staff members with many ethnic backgrounds and may improve family satisfaction with care.It has been translated and adapted in Italy, Japan and the Netherlands, and current translation and adaptationwork is being conducted for France. This is a relatively low-cost intervention.Source: Arcand et al. (8).25