The Experience of the Spouse Caring for a Partner with Parkinson's Disease/nga Wheako O Tetahi Hoa Rangatira I Tana Mahi Atawhai Itona Hoa Kua Pangia E Te Mate Parkinson

Abstract

IntroductionIn New Zealand (NZ), life expectancy is rising and so is the ageing population of the country (Pitcher, MacAskill, & Anderson, 2014). People over 65 years of age make up the largest percentage of individuals with long-term conditions (Statistics New Zealand, 2014). A common long-term condition is Parkinson's disease (PD) which is a slow, progressive neurodegenerative disease affecting 10,000 people in NZ (Parkinson's NZ, 2015). The predicted life span of a person with PD is 15 years from diagnosis (Best Practice Journal, 2014) with over 75% of people experiencing dementia after 10 years (Hawley, Armstrong, & Weiner, 2014). The spouse of the partner with PD is usually very willing to take on the role of informal carer, but often is not prepared for what will be involved. Caring for someone over a long period of time is known to have detrimental effects on the caregiver's quality of life (Irving, 2005; Jorgensen, Arksey, Parsons, & Jacobs, 2009). The carer may deal with lack of sleep, grief, social isolation, worry and depression (Greenwell, Gray, van Wersch, van Schaik, & Walker, 2015). The purpose of this study was to understand the experience of the spouse who cares for a partner with PD in NZ, identify areas of support that may be needed, and inform professional health practice.Literature reviewThe literature relating to PD and the spousal caregiver was explored with particular attention given to, but not limited to research done in NZ. There is consistent evidence throughout the literature that being an informal caregiver over a long period of time can be detrimental to one's health (Irving, 2005; Lyons, Stewart, Archbold, & Carter, 2009; McLaughlin et al., 2010; Morley et al., 2012; Roland, Jenkins, & Johnson, 2010; Tan, Williams, & Morris, 2012). Importantly, literature stressed how vital the informal caregiving role is because it enhances the quality of life of the person with PD and is also of economic benefit to the government (Jorgensen et al., 2009; Presho, 2008). In NZ, the government theoretically acknowledges the contribution of all informal caregivers and seeks to provide support and assistance to them in line with the New Zealand Carers' Strategy Action Plan (Ministry of Social Development, 2014). However, McPherson, Kayes, Moloczij, and Cummins (2014) and Carryer, Doolan-Noble, Gauld, and Budge (2014) maintain that government services and programmes related to integrated care for people with long-term conditions and their carers are lacking.Roland et al. (2010) argue that of all the literature published internationally about PD, only 1% focuses on the problems of caregiving. Only a handful of researchers have prioritised research examining the psychological and psychosocial impacts of PD on the informal caregiver (Carter, Lyons, Lindauer, & Malcolm, 2012; Davis et al., 2014; Greenwell et al., 2015, Kudlicka, Clare, & Hindle, 2014; Lyons et al., 2009; McCabe & O'Connor, 2012; Morley et al., 2012; Schrag, Hovris, Morley, Quinn, & Jahanshahi, 2006). Greenwell et al. (2015) investigated the impacts upon carers of people with PD through a systematic review of 29 studies. They concluded that most of the studies were of poor quality but acknowledged that non-motor symptoms in the PD sufferer, variables that predict poorer quality-of-life, and carer depression need to be researched further.Parkinson's disease is only a small subset of chronic diseases affecting 13,000 people (Parkinson's NZ, n.d.) compared to 50,000 with Alzheimers disease (Alzheimers NZ, 2014) in NZ. Consequently it has been noted that in a general practice in NZ of 1000 patients, only three would have PD (Best Practice Journal, 2014). Informal carers perceive that General Practitioners (GPs) do not have a good in-depth knowledge of PD (Lee, Shine, & Lewis, 2015; McLaughlin et al., 2010; Sheriff & Chenoweth, 2003). Similarly Buetow, Henshaw, Bryant, and O'Sullivan (2010) and Roland et al. …