Helen Rochford-Brennan Chair, Irish Dementia Working Group “In my ...

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Jun 30, 2016 - was through his quick response to my email and meeting people from ... This new place has its own timetab
Helen Rochford-Brennan Chair, Irish Dementia Working Group

Helen speaking at the launch of The Alzheimer Society of Ireland’s Pre-Budget Submission on 30th June 2016. “In my mid-fifties I started to experience memory problems and finally I was diagnosed with Early Onset Alzheimer’s in 2012 at the age of 62 while I was busy working and planning my retirement. I enjoyed a professional background and was a passionate campaigner for human rights. This was my life before dementia crept in; before I found myself having to fight for my own rights. It was like a slow realisation that a creeping fog had descended on your life and was there for good. My day-to-day tasks became worryingly challenging. First, it was forgetting words, stopping midsentence, wondering what I was about to say, searching, covering up, forgetting again. Simple tasks that I had been doing all my life became a chore, a worry. I found my slowed thinking difficult to deal with. It impacted on me in many ways: such as trying to remember something I had newly learned, seeing words but unable to reach them, forgetting events at a recent meeting. I can still see people’s faces and feel the burning silence when words would not come at a meeting. That's when I really began to get scared. Family life became more and more difficult. I would chat to my son on the phone and forget the plans we had just discussed as soon as I hung up, or forget something important my husband had told me. Prior to my diagnosis I struggled on at work, still hoping that the mental sluggishness was due to stress and over-exertion. It took so much effort just to keep up, to maintain the guise of normality. When offered the option of early retirement I felt I had no choice but to take it as I slowly drifted from the vital, funny, energetic woman I used to be and inhabited the shadows. I then stepped down from all the committees I was on. At home, with no focus outside of myself, the days seemed endless, my energy sapped. I slept long hours, and lost all motivation. The GP listened-- he referred me to a consultant and finally I got the diagnosis. Then the deepest darkest grief descended upon me for a life I would never have. Ask yourself this question, how do you tell your loved ones that within an undisclosed amount of time you will not be able to recognise them, nor retain any of the wonderful memories that you've banked along the way? I remember lying awake, staring into the blackness, wondering where do I go from here? A flurry of visits to the doctor and the consultant followed, as I tried to come to terms

with the diagnosis, but there was yet another blow to come. More bad news; the threshold age for Alzheimers' support is 65. For anyone diagnosed with dementia-related illnesses before their 65th birthday, there is nothing. And I mean nothing at all; no support services, nowhere to go, no-one to give you advice or tips on how to proceed. For me, having spent my adult life campaigning for human rights, this was inconceivable. I couldn't believe that because of a random number, I would be ignored. Worse still, refused all help and services. But I didn't have the strength or will to fight it. I retreated. I felt helpless for the first time in my life, no plan, no ideas, and no strategies. On the advice of my consultant I visited Western Alzheimer’s and the nurse there suggested I should get involved in research. Eventually I got in touch with Ian Robertson, professor of psychology at Trinity College, not knowing that this chance meeting would be a turning point in my life. Because it was through his quick response to my email and meeting people from The Alzheimer Society of Ireland that I began to find a place in the world again. Professor Robertson referred me to his colleague Dr Michelle Kelly who in turn invited me to attend the Irish Dementia Working Group in 2013 and participate in Cogitative Rehabilitation Therapy, which is where my journey into light began. Since that first meeting of the Irish Dementia Working Group, of which I am now Chair, I have made the huge spiritual leap from personal acceptance of living with the condition, to political activism to changing how we live with the dementia in Ireland. Because with adequate dementia supports and services, we can live well with this condition, we can live in our own homes; we can continue to stand, continue to fight and continue to be counted. We can’t deny this condition but we can, with your support, continue to defy the verdict. We were overjoyed to see the publication of the country’s first National Dementia Strategy in December 2014, and whilst some progress has been made there is so much more to do. We need our public representatives to reassure the people living with the condition now, and the 20,000 more people who will develop dementia in the lifetime of this government, that they will not be forgotten, even as we forget ourselves. The majority of us living with dementia are living in our communities, and we are fighting hard to stay there, but we need support. Almost half of the costs associated with dementia are borne by family carers but unless they get support and dementia-specific care in the home this cost will fall to the State. Public policy should aim to enable people with care and support needs to live independently in their own homes for as long as possible. We in the Irish Dementia Working Group believe that people with dementia who want to remain in their own homes should be supported to do so for as long as possible. When a person with dementia moves into a care home, they may feel incredibly confused and experience further stress. They are suddenly in a new environment, full of strangers and unfamiliar objects. This new place has its own timetable, and a host of different noises. It can be very difficult. They may have lived in their own home for 40 or 50 years, and suddenly they have to sleep in a new house with strangers which are not only frightening but very sad. Of course, for some people the highest level of care will be required and long-term residential care may be the right option, but for the majority of us access to home care and support is essential.

People with dementia have the same human rights as everyone else, but we often face barriers to fulfilling these rights. We have a right to information, to diagnosis, to post-diagnosis supports. We have a right to community-based services and to be cared for in the place of our choice. We have the right to be a part of our community no matter how progressed our dementia is. We have the right to remain in our own homes, with our families for as long as we can. In April of this year, The Alzheimer Society of Ireland and the Irish Dementia Working Group launched a Charter of Rights for People with Dementia. This marked the start of a new journey in dementia and highlighted the need for change. As someone living with dementia, I know only too well how much that change is needed. We need to change how we talk about dementia and how we develop dementia friendly societies. We need to change how we involve people with dementia in decisions about their future and decisions about where they live. We need to change how we care for people with dementia. Home care is not just a solution to the hospital crises. Appropriate home care will allow people with dementia to live well in their own communities for longer. Dementia and the need for home care is an issue that affects or will affect everyone. We need to ask ourselves, what kind of society do we want to live in? A society that channels people with dementia into institutional care or a society that recognises that people with dementia have much to contribute, and that with the right supports we can continue to be independent, to live in our own homes and to remain active in our communities. As advocates in the Irish Dementia Working Group we intend to demand our rights, and to work to ensure that people with dementia are given the care and respect they deserve. We must not just talk about a Social Model of Care; it needs to be implemented so people with dementia enjoy an active, happy and fulfilling life in their own homes.” Please support our campaign for funding to give people with dementia the choice to remain at home. Go to www.alzheimer.ie and sign our petition to ask Government to invest in home care for people with dementia in 2017.