Projecting the Home Support Needs of Adults with Neurodegenerative Disorders in Western Australia to 2050: Policy Implications
Faculty of Business and Law
School of Accounting, Finance and Economics
Aim: The study objective was to investigate and estimate the current and future home support needs of adults with Multiple Sclerosis, Motor Neurone Disease, Parkinson’s Disease and Huntington’s Disease who are living in the community.Method: The study had six components including (i) a postal survey of members of support agencies and clients of home care service providers (n = 1,095) to identify (then) current home care support services and gaps in services, disaggregated by type and stage of disorder and living arrangements; (ii) data linkage of member and client data-bases to derive estimates of the complexity of service provi-sion; and (iii) projections of home support needs and gaps to 2050, based on the survey estimates of needs and gaps, linked data and reported incidence and prevalence patterns.Results: The gaps in home care support were found to average 1.45 hours per week for personal care (n = 61), 0.53 hours per week for domestic assistance (n = 189), 1.33 hours per week for social support (n = 52) and 0.87 hours per week for gardening and home maintenance (n = 85). For all respondents who reported receiving home care support (n = 222), the average gap overall was 1.49 hours per week. This ranged from no total gap for 108 respondents to a gap of 34 hours per week for one respondent who needed an extra 27 hours of personal care and 7 more hours of social support. The data linkage exercise found that two thirds of support agency members or home care service provider clients received support from only one organisation (n = 1,627). Twenty-eight percent (n = 724) received support from two organisations and 7 percent (n = 178) from three organisa-tions. Less than 1 percent (n = 21) received support from 4 or 5 organisations.Conclusion: In the absence of changes to funding rules, estimates of the growth in gaps in home care support are expected to increase with the ageing population as well as with increases in the incidence of some of the disorders, namely Multiple Sclerosis and Parkinson’s Disease. However, better treatments into the future, for example for Motor Neurone Disease, may improve longevity and reduce the call on supportive services. For families with Huntington’s Disease, an increase in the uptake of predictive testing may result in falling incidence rates.