22-25 May 2008 - "Breaking Barriers" - Oslo
At the 18th Alzheimer Europe Conference, entitled “Breaking Barriers” in Oslo, Norway, some 620 delegates were confronted with the barriers people with dementia face and how necessary, and indeed possible, it is to break them down by exposing the myths and taboos that surround this disease. Encouragingly, amongst these delegates was the coordinator of the French Alzheimer’s Plan, Florence Lustman, the Norwegian State Secretary for the Department of Health and Care Services, Kari Henriksen, as well as nine Belgian MPs on a fact finding mission. This may be evidence that efforts to get policy makers to face the dementia epidemic seriously are paying off.
At the opening session of the Conference, the first boundary to be challenged was that of how we address the issue of dementia. Professor Mary Marshall from the University of Stirling, Scotland invited us to widen our perspective to ensure that dementia and ageing be considered within a global context, rather than in isolation. Mary emphasised that both ageing and dementia “become more of a challenge when we look at the connections between them and other global issues”. Over 60% of the world’s oldest citizens live in the “developing” world and Mary drove home the impact that food and water shortages, wars and conflict have on people with dementia and the need to address global challenges at national, European and international levels. Half of the world population now lives in cities, and, added to this, is the fact that out of every 35 people, one person is now a migrant (of which nearly half are women), and the consequences for people with dementia are that they can suffer by being either left behind without support, by joining their families but then having to adjust to their new lives but also by being left to be cared for by people from other countries who may, or may not understand the culture they work in. It was clear that dementia cannot be addressed in isolation and this notion was to be heard repeatedly throughout the conference.
Whether it is possible to lead a good life with dementia was considered in the first plenary session. Enlightening and delighting his audience, Carlo Chiesa, an Italian priest who has dementia, told us that despite being frustrated with his inability to recall names of people he has known for many years, he believes that he is now in the happiest and freest time of his life.
However, it became apparent that opportunities to enhance the lives of people with dementia are being missed. Anyone who heard the Norwegian, ex-Minister for Fisheries, Jan Henry and his wife, Laila Lanes, talk at the Alzheimer Europe Conference in Oslo, could not have failed to be deeply moved by their brave and open explanation of how living with dementia has not only had an impact on their lives, but has also revealed the barriers that exist for people with dementia. Mr Henry explained to the Conference how, somewhat unexpectedly, he encountered a barrier as early as when his diagnosis was given. Confused by a well-meaning, but misguided health professional, who wished to “keep it (the diagnosis) quiet” has resulted in Mr Henry being motivated to challenge such stigmatisation.
Christine Swane, Director of the EGV in Denmark, said that “stigmatisation goes to the core of what it means to be a human-being”, yet it is “in this area that there is a huge potential to improve life for people with dementia”. She cited Tom Kitwood’s approach to move the focus away from talking about a person with DEMENTIA to instead focus on a PERSON with dementia as a way to achieve destigmatisation.
“Life for a person with dementia is a life with boundaries” stated Beata Terzis of the Södra Stockholms Geriatric Clinic, Sweden, and she advocated that changing people’s attitudes toward this disease is only part of helping people to live with it. Amongst other measures, Beata talked of the unique benefits early diagnosis of dementia can give in that “unlike many others that receive information concerning a fatal disease, we have – if nothing else occurs- time to prepare ourselves and our loved ones as well. We have time to make the most out of important things in our lives”.
An understanding of the disease itself, the risk factors associated with it, its genetic basis, its clinical features and its development as well as understanding how we might prevent or delay the onset of dementia is crucial if we are to remove barriers to good practice. The plenary session, “Knowledge today, perspectives for tomorrow” was dedicated to just this. Peter Wetterberg of the Department of Geriatrics, Ullevål University Hospital, Oslo, gave an absolutely fascinating presentation regarding memory loss and how being forgetful is distinguished from that of having a disease. Illustrations of hereditary dementia as well as the consequences of DNA testing were given by Jørgen E Nielsen of the Memory Disorders Research Unit of Copenhagen University Hospital, Rigshospitalet who concluded by quoting Erik Pontoppidan who said “You cannot be too cautious in making your choice of parents!”.
Describing the measures we can take to reduce our risk of dementia, Miia Kivipelto of the Karolinska Institute, Stockholm, emphasised the need for a combined private and public role to address dementia, reminding us of our own personal responsibility in that “nobody can take better care of your health than yourself”. She also referred to the Ottawa Declaration which states there is a public responsibility to “make the healthy choices the easy ones” reinforcing the multi-disciplinary action required to address this disease.
Fundamentally, any approaches taken to help people with dementia will be bound to fail if they do not recognise, support and value the immeasurable contribution carers make. This was recognised in the title of the final plenary presentations calling carers and volunteers an “irreplacable resource”. Appropriate support for people with dementia and their carers was, we heard from Florence Lustman, at the heart of the French national plan on Alzheimer’s, but, the importance of collaboration on an international level is necessary to ascertain the nature of the best support to offer. A range of tailored interventions for carers were recommended by Bob Woods from the University of Wales, UK, after he raised the issues of depression and strain amongst carers. He also illustrated how carers can feel unheard when he quoted a carer saying “It was as if the five years of my looking after him didn’t really count … but it was as if “Oh, we’re the professionals, we know what we’re doing”.
After each plenary session delegates were able to select from a wide range of parallel sessions, which supported the morning’s presentations. Included in the parallel sessions were topics such as end of life issues, sexuality, younger people, legal and ethical issues, art and culture, and technical aids, to name but a few. In addition, the delegates were given insights into the world of people with dementia and their carers by their diary extracts being beautifully read to us by actors Godfrey Jackman and Pam Lyne.
Over the four days a common thread emerged. For people with dementia and their carers barriers do indeed exist which are possible to break, but it cannot be done in an isolated fashion, it requires that all actors collaborate, share information and work together. Only by this tailored, mutli-disciplinary approach will we be able to deconstruct barriers.
The Conference ended with a strong and personal message from Heike von Lützau-Hohlbein, of the Deutsche Alzheimer Gesellschaft, whose mother and mother-in-law had both lived with dementia. Heike summarised the challenges that lie ahead for Alzheimer societies, with perhaps the most important being that we should “allow our loved ones to live in dignity with self-determination, hope and humour”. Closing the conference, Heike focused our minds by reminding us of Peter Ashley, who has dementia and who emphasises in his public speeches that “I am living with dementia, not dying from it”.
Last Updated: Friday 23 October 2009