Monday, October 8, 2012
Alzheimer Europe 2012, Day One
The theme of the conference this year was “Changing perceptions, practice and policy” and the organizers did an excellent job of shaping plenary sessions around these topics. Almost immediately, a speaker spoke about the need to change perceptions of persons living with dementia: they’re not helpless old people and they can make decisions for themselves.
One outstanding feature of this conference is that it includes persons with dementia and their care partners; this year about 15 people with various dementia diagnoses attended. In all, there were more than 500 participants from 42 countries.
The Austrian Minister of Labor, Social Affairs, and Consumer Protection spoke to welcome the group to Austria. He noted that his office has responsibility for dementia-related programs and emphasized the significance of not placing these programs in the Ministry of Health. In Austria, all family carers have health insurance and they are eligible for up to 14 days per year of government paid respite care. Nurses go to homes to support family carers and there are a growing number of mobile service teams for persons with dementia. Of course, Americans reading this are wondering how all this family support is paid for. This question takes us directly to the policy question.
After the opening greetings, a panel of five persons discussed national dementia strategies in European countries. Some have been in place for several years; others are just about to be adopted; still others are several years from being finalized. Speakers emphasized the need to ensure that the focus remains on persons with dementia and their carers. Having a national strategy is a justice issue: all citizens should receive equal attention and care regardless of their cognitive ability.
Several panel members spoke about the need to raise awareness about dementia to encourage early diagnosis. Another way of saying this is that dementia can be reframed as a disease of middle age, not of old age. In other words, with early diagnosis, more people still in their 50s will be learning they have some form of dementia. Alistair Burns of the UK commented that you need a story about dementia in order to motivate politicians to support national strategies. He noted that for the next election of a Prime Minister in the UK, 50% of all eligible voters will be over age 50. That ought to get some politicians’ attention.
After this panel discussion of policy, and ample Austrian sweets at a coffee break, the conference launched into the first plenary session on the subject of changing medical and clinical practice. Bruno Dubois of France compared the old approach to diagnosis of Alzheimer’s disease (e.g., that it’s only definitive after death; diagnosis is described as “probable;” and people only get diagnosed when the disease is advanced). He urged a new definition: “an amnestic syndrome of the hippocampal type.” This is possible now because advances in brain imaging can show hippocampal shrinkage and cognitive tests can pinpoint the type of memory disorder a person is experiencing (differentiating, for example, memory problems due to depression, hippocampal damage, frontal lobe dysfunction, or garden variety normal aging).
Three more speakers followed Dubois, addressing issues of prevention, treatment, and brain imaging. Eric Larson of the USA suggested that we may have begun to see a decline in the rate of dementia through control of vascular risk factors and more education for younger cohorts. It remains to be seen if this is true, but his take-home point was that “senescence is not inevitable.” He wasn’t arguing for “anti-aging medicine” (thank goodness), but he was clearly stating that we have strong scientific evidence about risk factors that if addressed, can postpone the onset of dementia. These risk factors include physical inactivity, depression, smoking, mid-life hypertension, mid-life obesity, and diabetes. In other words, public health campaigns to improve health in midlife can affect the prevalence of dementia in old age. Once again, consider the radical change in perspective that would come from defining dementia as a disease of midlife.
After a sumptuous, delicious lunch buffet, we split up to attend parallel sessions featuring five to six short presentations. John attended one that further explored national strategies and then presented his work on spiritual care for the “deeply forgetful” (a term from the work of ethicist Stephen Post) at a session on psychosocial interventions. Susan learned about current thinking on legal and ethical issues related to dementia. Then, having agreed that they would go to different parallel sessions in order to learn as much as possible, she heard five speakers who discussed various types of arts programs. She was especially inspired by talks by two Australians, one of whom talked about the arts as a vehicle for “social citizenship,” a term just now coming into use in the dementia studies world. It reminds us of social, political, and cultural forces at play in the lives of persons living with dementia.