Abstract

Objectives: To: (1) identify the information needs of caregivers facing decisions about the initiation of antipsychotic medications in persons with dementia in long-term care, and (2) assess the level of support for a decision aid for antipsychotic medications.

Methods: A stakeholder group was formed in Saskatchewan, Canada. This group was comprised of five family caregivers of persons with dementia in long-term care (child, spouse, in-law) and five health professionals working with persons with dementia in long-term care (nurses, psychiatrist, psychologist, pharmacist). Nine of the stakeholders were interviewed by telephone, and one face-to-face, using a semi-structured interview guide. Interviews were digitally recorded and transcribed verbatim. Themes emerging from family caregivers and health professionals were identified and then compared.

Results: Family caregivers reported difficulty in getting information about their loved ones from health care professionals working in long-term care. Some family caregivers: (1) were unaware that antipsychotic medications had been started or stopped; (2) could not remember if the side effects of antipsychotic medications had been communicated to them by health care professionals; and (3) witnessed unexpected side effects of antipsychotic medications in their loved ones. To gain information about antipsychotic medications, family caregivers did personal research online or spoke with other family members with medical expertise. Family caregivers expressed concerns about other: (1) family caregivers who lacked awareness or knowledge about antipsychotic medications, and (2) long-term care residents without family to advocate on their behalf.

To make an informed decision about the initiation of antipsychotic medications, family caregivers and health professionals believed that information was needed about: (1) the risks and benefits; (2) why they were needed; and (3) available alternatives. Some health professionals believed that family caregivers should be told the implications of not initiating antipsychotic medications (i.e., resident with dementia may not be able to stay in long-term care if poses risk to others). Most family caregivers preferred to receive information about antipsychotic medications in writing first, followed by a face-to-face meeting, or telephone conversation, with one or more health care professionals.

Most health care professionals communicated information about antipsychotic medications verbally to family caregivers of persons with dementia in long-term care and felt that written information might sometimes be helpful. Health care professionals identified family caregivers’ lack of education, cognitive impairment, and stress as barriers to communication about antipsychotic medications.  

Family caregivers and health professionals expressed a high level of support for the development of a decision aid to facilitate informed decision making about the initiation of antipsychotic medications in persons with dementia in long-term care. Health care professionals felt that the development of a decision was central to what they do and aligned with the provincial government’s attention to the use of antipsychotic medications.

Conclusions: There is an urgent need to attend to the information needs of family caregivers of persons with dementia in long-term care prior to the initiation of antipsychotic medications in their loved ones. A high level of support exists for the development of a decision aid to help address these information needs.