August’s Member Blog comes to us from Gráinne McGettrick of the Alzheimer Society of Ireland, on the importance of the principle of “personhood” and the involvement of people with dementia in issue that concern them.
2011 was a pivotal year for the 41,700 people with dementia in Ireland and their 50,000 carers when the new Government prioritised dementia as a health priority with a commitment in the Programme for Government to develop a National Dementia Strategy. The Alzheimer Society of Ireland (ASI), as the leading service provider and advocacy organisation has, for several years, advocated to make dementia a political priority and to enhance the investment in dementia care services in Ireland. ASI also works together with a variety of umbrella advocacy groups, including Mental Health Reform, to achieve a range of collective aims on policy changes that will in turn improve the lived experience of dementia.
Dementia is an organic brain disease that causes brain cells to die. The damage caused to the brain affects the person’s ability to remember, think, speak and to do everyday things. Dementia is not a mental health condition but very often people living with dementia experience mental health problems as part of their dementia. These are often referred to by healthcare professionals as behavioural and psychological symptoms of dementia (BPSD). If a person with dementia is experiencing BPSD and having mental health issues they are usually referred to a psychiatrist of later life for assessment and treatment and may be provided with on-going support from the mental health services. Therefore, any changes in mental health policies can positively or negatively impact on the lives of people with dementia.
But it’s not just mental health services that people with dementia and their families interface with, it’s a complex equation involving a range of clinical disciplines, a broad span of service providers and healthcare professionals right throughout the disease trajectory. Having access to and ensuring interaction with the appropriate service or healthcare professional at the appropriate time is very challenging for the person with dementia. Even getting a diagnosis and having that diagnosis disclosed in a timely and appropriate way is really significant and a massive issue in dementia care.
In addition to the labyrinth of service interfaces, there is limited clinical and policy leadership in the Irish healthcare system, leading to a major vacuum in dementia orientated services and supports. The forthcoming National Dementia Strategy will hopefully begin to address the policy vacuum and ASI is also advocating for the appointment of a clinical lead and the development of a clinical care programme for dementia.
When we talk about dementia, stigma is never too far behind. Dementia stigma is not a new phenomenon. It is actually centuries in the making. The word ‘dementia’, is taken from the latin word demens which means ‘without a mind’. Stigma is an entirely socially constructed phenomenon. So our understanding of dementia is firmly rooted historically, socially and culturally. The stigma associated with dementia is a result of how it has been constructed, how this construction is interpreted and indeed how it is played out in everyday life. We need to begin to form a new and alternative to the existing narrative on dementia and the concept and practice of personhood is how we can start to begin to address the stigma of dementia.
One of the most crucial assets that the Alzheimer Society of Ireland has is people with dementia; they are the key to change. To this end we have recently formalised the National Working Group of People with Dementia. This peer advocacy group comes together to meet every quarter and to discuss issues that pertain to their lives. They have given collective input into the National Dementia Strategy policy formulation. Members of the group also speak at conferences and events. As a society and as advocacy organisations and groups, we must continue to work together to ensure that those with dementia are respected and supported to live meaningful fulfilled lives.