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Supporting People with Younger Onset Dementia My main problem is that what I am feeling and what I am saying come out differently from what you are hearing. What I am trying to convey to someone is always misunderstood. ~ woman with younger onset dementia The unique aspects of younger onset dementia and its impact on individuals and families make providing assistance to this cohort both challenging and immensely rewarding. This article aims to provide readers with an understanding of younger onset dementia, highlight the importance of early intervention support, and raise awareness of the condition amongst counsellors and psychotherapists. What is Younger Onset Dementia? Younger onset dementia (YOD) is defined as dementia with onset before the age of 65. For Aboriginal people, younger onset is defined as dementia with onset before 50 years of age. There are approximately 16,000 people in Australia with a diagnosis of younger onset dementia (Deloitte Access Economics 2011). YOD can be caused by a number of conditions such as Alzheimer’s Disease, fronto-temporal lobe degeneration, vascular conditions, stroke, alcohol abuse, and Lewy bodies, as well as developing as a result of other comorbidities such as Parkinson’s Disease, Multiple Sclerosis, Huntington’s Disease, HIV-AIDS, and Down Syndrome. Different types of YOD present different symptoms, which may vary from one individual to the next. For example, people with frontotemporal dementia may exhibit considerable changes in behaviour, including increased aggression and decreased inhibition (Mocellin et al. 2008). In 2011, Alzheimer’s Australia NSW (AlzNSW) was engaged by the Department of Family and Community Services NSW, Ageing Disability and Home Care (ADHC) to research the service and support requirements of people with YOD and their families. AlzNSW partnered with the Social Policy Research Centre at the University of New South Wales (UNSW) and UnitingCare Ageing to conduct the research, the result of which provides a comprehensive account of the service and support needs of people with YOD and their families. Roundtable group discussions and in-depth individual interviews were conducted with people with YOD, family carers and service providers. People with YOD and carers also completed questionnaires. The research findings have been published in a literature review (Thompson 2011) and a final report (Brown et al. 2012). Diagnosing Younger Onset Dementia People with YOD and their carers who participated in the research project reported noticing a variety of changed behaviours over a period of time prior to receiving a diagnosis. These included continually getting lost, being unable to read maps, forgetting appointments, being unable to tell the time, experiencing speech difficulties, having difficulties with activities of daily living including self care and cooking, forgetting to eat; demonstrating personality changes, showing aggression, driving dangerously, experiencing short-term 16
memory loss, having poor spatial perception, making poor financial decisions, being paranoid, and going through mood swings. People may not recognise such symptoms as problematic for several years, resulting in a delayed diagnosis of YOD. This can impact significantly on individuals and their families. Service providers reported that often partners and family members did not realise there was a reason for the person’s changed behaviour, which, in some cases, led to relationship and family breakdown. There is no simple test for the diagnosis of dementia. Diagnosis is made on clinical assessment and supported by investigation results. This includes a comprehensive assessment to ensure that other conditions that show similar symptoms are identified or eliminated. (Workman et al. 2010:723) Younger people experience considerable delays in obtaining a diagnosis of dementia and often the initial diagnosis is stress, depression or other mental illness. Delays in diagnosis may in turn delay treatment, affect disease progression, delay access to services and supports, as well as reduce the time available for legal, financial and care planning. Often it is not until a crisis situation is reached that a diagnosis of YOD is received. Many people interviewed experienced a lengthy diagnosis process that often involved convincing their GP that something was indeed wrong, followed by one or more misdiagnoses, before YOD was confirmed. Very rarely was the diagnosis process simple. People with YOD expressed concerns about the poor way in which their diagnosis was communicated, the lack of information they were given about dementia, and the lack of compassion, empathy and respect that was often displayed in the delivery of the diagnosis. They also expressed their disappointment at the lack of follow-up appointments and referrals to support services. The Emotional Rollercoaster For some people, receiving a diagnosis is a relief, as they finally have an explanation for the difficulties they have been experiencing. Other people struggle to accept the diagnosis and lack insight into the extent of their condition. The time taken to accept a diagnosis can impact on the timeliness of people with YOD accepting assistance from support services; it may not be until they reach a crisis situation that they become willing to accept support, by which time they have lost the opportunity for early intervention. There is a lack of understanding and awareness of YOD. Public perception is that dementia is ‘an old person’s disease’. Increased community awareness is needed concerning the condition, the impact of a diagnosis and the issues faced by people with YOD and their families. YOD is not a visible condition, and people CQ: The CAPA Quarterly