The informal caregiver's knowledge on their relative's dementia : a quantitative study

Abstract

Dementia is a medical term which is associated with a group of brain diseases which contribute towards the deterioration of cognitive functions. It is associated with both short and long term memory impairments. Most of the people with dementia are cared for by family members in the community. Studies have shown that this is very stressful for the informal caregivers, however most find that organised meetings are highly satisfying in terms of psychosocial help. In Malta at present services available to the patient and their informal caregiver are scarce, however awareness regarding dementia is increasing and so is the information about the few services already available. The purpose of this thesis was to investigate the informal caregiver's knowledge on their relative's dementia. The research objectives of the study were to examine whether the family caregiver has general knowledge about dementia, to explore whether information was given as part of the initial diagnosis and to investigate caregiver's awareness of the services available with regards to dementia. Moreover the informal caregivers were asked to write what other services they feel are needed to help other caregivers like themselves. A quantitative phenomenological research design was conducted to reach the aims and objectives of this study. The study involved 30 informal caregivers who accompanied a patient with dementia to a follow up appointment. Data was collected through an open format questionnaire. Descriptive analysis of the data was done by using Microsoft Excel. The results indicate that most of the participants had a good background knowledge regarding dementia. This study also showed that participants felt that they were not given enough information during the diagnosis. Knowledge regarding the services currently available was weak, only half of the respondents were aware of the respite care and less than a quarter of the participants stated that they attend self help groups. A number of recommendations for practice, research and education were put forward. One of the recommendations is that practitioners and nurses should be educated about dementia in order to help both patients and their relatives understand the disease. Moreover practitioners and other members of the multidisciplinary team must educate the patient and informal caregiver. Education needs to be reinforced at each visit. It is recommended that practitioners, nurses and social workers inform caregivers on how to access services available to them. Finally the results indicate the urgent need to formal self help groups.