Employability in children acting as caregivers of persons living with dementia in the Maltese Islands

Abstract

VALUE AND PURPOSE: Exponential growth in prevalence of persons living with dementia (PLWDs), higher demands of care, shrinkages and changes in family structures, economic pressures, personal desires, and political efforts (particularly on women to enter or remain in paid employment who are also the mainstream of informal dementia care) are conflicting realities being faced globally and in Malta. Employed informal caregivers perform a balancing act whereby caring responsibilities may act as a barrier on employability prospects. Malta is a major contender in dementia activism and established structures to assist in dementia management and care, but the national dementia strategy and policies fail to explicitly address social protections relating to employability in dementia care. This study explored an untapped constituent – employability prospects amongst children acting as informal caregivers of PLWDs (CICPLWDs) in a microstate. DESIGN: A quantitative nonexperimental design with convenience sampling was adopted and data was collected through a self-administered questionnaire disseminated in hard copy in Maltese and English languages. Comprising of three sections of close-ended questions, it incorporated CICPLWDs’ demographics and informal care profile, a reliable and valid 47- item Competence-based Employability Five-Factor Instrument, and a list of workplace policies and existing Maltese government-supported community care services. Three assessment tools were used to stratify cognitive and functional decline in PLWDs. FINDINGS: Local CICPLWDs were mostly female, younger than the international community, had preference for professional or emotional support, and did not seriously consider quitting paid employment. A negative correlation was found between PLWDs’ functional dependency and hours spent by CICPLWDs in informal care. Occupational expertise and balance were the strongest and weakest respectively of the five employability elements. Most of the statements comprising each of the elements did not correlate with employment sector, hours spent in informal care or employment, or impairment severity. Urgent family leave, leave for special instances, and courses offered by employers were the top three workplace policies known by CICPLWDs. Telecare+, Active Ageing Centres, Home Help, and Meals on Wheels were the most known public community care services; Dementia Memory Clinic and Domiciliary Dietician service were the least familiar. The Dementia Intervention Team was the most known dementia-specialised service. CONCLUSION: Quitting employment to undertake more hours of informal care was not a route desired by Maltese CICPLWDs. Rather, through a six-point Likert scale, CICPLWDs scored their employability opportunities as being fairly positive. Short-term recommendations include tighter support structures at work and close-knit teams including with management, establishment of collaborative practices to increase affinity with the firm’s values, and awareness on the services available to stimulate bigger take-ups. Initiatives involving professional and emotional help should dominate financial ones. Longer-term recommendations include the adoption of nationwide working time models and working from home initiatives. Policy should be built on effective solutions based on a tripartite system driven by a conglomerate – employers, a solid social network including caregivers, and beneficial care services – aimed at investing in human capital for sustainability of organisations and the economy, for desirable dual work-caregiving experiences, and at ensuring a quality of life for PLWDs.