Informal caregivers’ perspectives of services for community-dwelling individuals with dementia in the Maltese islands

Abstract

Dementia is one of the most important socio-medical and public health challenges affecting the Maltese population. The syndrome is not only characterised by the patient’s loss of independence but also by its impact on the lives of the caregivers, who most often are the relatives of the affected individual. In recent years, a number of services, including dementia-specific services, have been launched in order to assist individuals with dementia and their caregivers to continue living in their communities thus facilitating independence. Although some of these services have proved to be popular, research on their utilisation and level of satisfaction by community-dwelling individuals with dementia and their caregivers is lacking. Based upon a concurrent mixed methods design, data of 38 informal caregivers of community-dwelling individuals with dementia was collected using a specifically designed research instrument to determine which services are being utilised and the level of satisfaction on service use by caregivers. Six caregivers also agreed to participate to a face-to-face interview and share their experiences on dementia service provision. The study aimed to provide insight into the experience of caregivers of individuals with dementia living in the community who utilise a number of services intended to support them in their caregiving role. Individuals with dementia had a mean age of 76.7±6.1 years and were mostly living with their relatives. Caregivers had a mean age of 60.3±11.5 years, in the majority were daughters to the individual with dementia and had been in their caregiving role for more than five years. Results showed that caregivers mostly need assistance with washing, handling of medication and transportation. Among the dementia-specific services available to individuals with dementia, caregivers were mostly knowledgeable about the Dementia Day Care centres in both Malta and Gozo, the dementia wards at St. Vincent de Paul and the Dementia Helpline. Although the Memory Clinic at the Rehabilitation Hospital Karin Grech has been in use for more a decade, almost half of the participating caregivers had no knowledge of such service. Moreover, caregivers’ knowledge on dementia-specific services that were introduced following the recent launch of the national dementia strategy for the Maltese Islands, including the Dementia Intervention Team, were also found to be lacking. In general, caregivers indicated a high degree of satisfaction with most of the services they utilise but unmet needs still exist. The findings demonstrate that although a number of services aimed at individuals with dementia and their caregivers are available, there is still lack of awareness of their existence. Such data can be useful to inform education and dementia practice and policy regarding the components required for the delivery of community-based dementia services aimed at bettering the quality of dementia care in the Maltese islands. It is therefore essential for policy makers and other stakeholders working in the field to be aware of the lack of knowledge that is currently present on a number of dementia services in order to address this shortcoming.