Family members caring for people with dementia have a key role to play, given the latter’s high dependence on their carers and the comorbidities attendant on that condition. The Israeli Medical Center for Alzheimer’s in Ramat Gan was selected by the National Insurance Institute to operate a helpline for senior citizens with dementia who live in the community and for their family members. The helpline is designed to provide response in routine and emergency situations when the family needs help in coping with illness symptoms. The helpline is unique in four respects: it is operated by professionals; it provides home visits; it is available 24/7; and it responds also to the patients themselves, rather than only to their caregivers.
The Myers-JDC-Brookdale Institute has conducted a formative evaluation study to assess the helpline’s ability to reach out and contribute to the relevant target population. Namely, to assess the degree to which it meets the needs of the patients and their families in routine and emergency situations and helps them cope with the illness symptoms.
The research design includes a mixture of quantitative and qualitative methods. It includes semi-structured in-depth interviews with the helpline staff, phone interviews with callers, and analysis of administrative data on the helpline’s operations.
- During its first two years, the helpline responded to 6,752 calls (of which about one third were identified) and held some 400 home visits. Three percent of the callers called for themselves. Most of the identified callers were family caregivers: children calling for their parents (58%), partners (22%) or other relatives. Most family members reported that the burden they faced in coping with the patients was heavy. Most calls had to do with the progression of the illness and the difficulty of coping with the constant deterioration in the patient’s condition (including the behavior disorders attendant on the illness).
- Only a few calls were made at night or on weekends. In other words, most were not emergency calls.
- The examination of the helpline’s benefits to the callers indicated that two-thirds (65%) received replies to their questions; more than half (56%) reported feeling supported by talking to the helpline representative; 41% felt the talk helped them cope with the patient’s illness and its treatment; and 29% felt it helped them locate services to help them with the treatment.
- Analysis of the benefits to the callers by type of relation indicated that those calling on behalf of their parents felt that they benefitted more than those calling on behalf of their spouses. A periodic analysis indicated that the benefit to callers during the COVID-19 pandemic was higher on most indicators mentioned above compared to previous periods. Sixty percent said they would call the helpline should they have additional questions in the future.
- Those calling for themselves did so due to the cognitive deterioration that concerned them and the resulting sense of helplessness. They were less satisfied and felt that the conversation contributed less to them.
Discussion and Recommendations
- Meeting the target population’s needs: The helpline reached the relevant target population of family members coping with heavy burden of caring for a person with dementia. Those calling the helpline on behalf of their parents were more satisfied and felt they benefitted more from the talk compared to those calling on behalf of their partners. It is therefore recommended to examine how to improve the response to partners. Perhaps a more accessible response or a longer conversation would lead to greater satisfaction and more perceived benefits. It is also evident that the home visits were particularly helpful for partners. The current structure of the service is not adjusted well enough to the patient population, and we therefore recommend that the responses given to them be further refined. Moreover, as in other programs designed for family carers, greater effort should be made to reach out to unique populations, including Arabs, ultra-Orthodox Jews and migrants from the former Soviet Union, as well as disadvantaged populations more generally.
- Given that dementia is characterized by gradual deterioration and as the family members have expressed this need, it is important to structure the continuity of contact between the helpline and the callers.
- The helpline’s uniqueness: Upon its establishment, the helpline has four unique features: being staffed by professionals, 24/7 service, home visits, and response to the patients themselves. The findings suggest the need to provide more home visits reducing nighttime availability, thereby taking more effective advantage of the helpline’s strengths and the potential help provided by home visits. The continued response to the patients themselves need to be reexamined.
Citing suggestion: Weiss, D., Resnizky, S., & Laron, M. (2022). Helpline and Home Visit Program for People with Dementia and Their Families: A Formative Evaluation Study. RR-864-22. Myers-JDC-Brookdale Institute. (Hebrew)