Ageing Intensifies the Care Needs of Adults Living with Parkinson ’s Disease and their Carers

Abstract

Parkinson’s disease (PD) is the second most common neurological disorder in Australia typically affecting people over the age of 65. Few studies of people living with Parkinson’s disease have estimated current hours of home support and unmet needs. In addition no studies have been found that estimate hours of unmet need in terms of functioning or care arrangements or examined whether these estimates differ depending on the viewpoints of carers and the people living with PD whom they care for. In 2007, we surveyed the home care support needs of adults diagnosed with Parkinson’s disease in Western Australia (WA). The survey revealed that adults living with Parkinson’s disease prefer, and can be supported with, home care support services in lieu of residential care placement. As expected, required services increased as functioning decreased. In addition, unmet needs were found to be greater for those with carers irrespective of their level of functional dependency. Unmet needs for weekly services, for people that require home support services, are estimated at 38, 33, 55 and 47 min for personal care, cleaning, social support, and gardening and home maintenance, respectively. The survey also found that most carers and people living with PD agreed that current levels of different types of home care support including nursing were either adequate or insufficient; some carers preferred more services even if the people living with PD were satisfied and some people living with PD wanted more services even if their carers reported needing no extra help. Respite was used by 29 % of people living with PD with carers with two thirds wanting more opportunities for respite. Of the 71 % of people living with PD with carers who had not used respite, less than half stated that they would like to use respite. The 2007 survey was followed by interviews with a sample of survey respondents at different stages of their disorder. In the interviews, most of the people living with Parkinson’s disease commented that continuing to remain at home depended on the rate of degeneration of their disorder as well as the ability of their carers to continue to care. Most of these people and their careers were living day-to-day with a hope that enough support would be made available if and when they need it. As vocal Baby Boomers age, policymakers would do well to acknowledge the diversity of care needs for people with Parkinson’s disease and address the quantum and type of support to meet these needs.