Telephone support met the perceived needs of dementia caregivers for convenient access to information, referral, and emotional support
Q What are the dimensions of telephone support for caregivers of family members with dementia? What are the experiences of telephone support providers and caregivers related to telephone support?
8 female caregivers (age 50–80 y) who had been caring for a spouse (n = 3) or parent (n = 5) with dementia for a median 3–5 years, and 4 female telephone support providers (age 30–65 y) from the Alzheimer Society (n = 3) or a multiservice community agency (n = 1), who had educational qualifications in nursing or gerontology and 3–15 years of telephone support experience (3 providers also had personal caregiver experience).
Participants were interviewed in person or by telephone. They were asked about their experiences of receiving (or providing) telephone support and their views of the strengths and limitations of such support. Data from transcribed interviews were analysed through the processes of categorical aggregation, direct interpretation, pattern formation, and creation of generalisations.
Both caregivers and providers identified 4 dimensions of caregiver needs that were met by telephone support. (1) Information and education. Telephone support provided an immediate source of individualised advice and strategies to effectively manage problematic situations. (2) Referral to other sources of support. Telephone support connected caregivers with other support services in the community and helped them to navigate through the often complex systems. (3) Emotional support. Providers helped caregivers to cope by listening, acknowledging their efforts, and providing encouragement, reassurance, and coping strategies. (4) Support that is convenient and hassle free. Caregivers appreciated the convenience of telephone support because they could access it immediately from home, without worrying about booking appointments or finding substitute care for their family members. Telephone support was comfortable in that it could be used as a single resource for different types of problems, and it continued after the person with dementia moved to institutional care. Limitations of telephone support included restricted hours and lack of service for non-English speaking clients. Caregiver and provider experiences. The aspect of telephone support that caregivers valued most was the sense of companionship and connection it provided. Providers reported feelings of helplessness and frustration in not being able to do more or gauge how their advice was received. However, they enjoyed the satisfaction of empowering caregivers to cope with difficult situations. Both groups agreed that the experience of telephone support was more rewarding when caregivers and providers had met face to face and when the provider knew the person with dementia.
Telephone support met some of the needs of caregivers of family members with dementia by providing convenient access to information and education, referral to other sources of support, emotional support, and companionship.
- Karen Spilsbury, RN, PhD
Caring for a family member with dementia is stressful and burdensome. Caregivers’ physical and emotional health often suffer as a result.1 The descriptive study by Salfi et al provides new and useful insights into how support using telephone technology can potentially meet some of the needs of caregivers. However, transferability of the findings is limited because of the small convenience sample. White, female caregivers from a single geographical region were interviewed; the absence of male and non-English speaking participants should be noted. This is important as the caregiving experience is shaped by ethnic, cultural, and geographic factors. Female caregivers, in particular, often experience a greater burden. Moreover, certain societies (eg, Asian cultures)2 may have differing expectations of the caregiving role and fewer state sponsored resources available to support caregivers.
The study by Salfi et al did not address the differing information and emotional support needs, expectations, and experiences of spousal and adult child caregivers.3 Some providers in the study had contact with caregivers as part of a multicomponent support programme. These providers understood the caregiver’s situation when offering support. Those providing support without knowing the caregiver and having little understanding of the specific caregiving context experienced frustration and difficulties. Telephone support delivered in isolation from other support interventions may be insufficient.
The study by Salfi et al offers nurses insights into one possible intervention to support caregivers of people with dementia. Further qualitative research using a more ethno-culturally and geographically diverse sample would illuminate the relation between caregivers’ perceived needs and the interventions that seek to meet them. Such research offers those designing good quality evaluations a solid foundation for the development of these complex interventions.4
For correspondence: Dr J Salfi, School of Nursing, McMaster University, Hamilton, Ontario, Canada.
Sources of funding: Alzheimer Society of Hamilton and Halton and Wellington-Dufferin Community Care Access Centre.