Board of directors 2 members ; extended board 3 representatives of active members; people with dementia. To support the dignity and quality of life of people with dementia. To inform patients and family members on non-pharmaceutical treatments. Pose ethical questions concerning dementia. Maintain contacts with politicians in. They should not be isolated in homes or other institutions. Aktion Demenz e. Board of directors l0 members Services to: Society. Support civil engagement to improve living conditions of people with dementia. Aim to diminish stigmatization by raising awareness. No direct involvement, but they influence the political lobby by strengthen the idea that social action is of utmost importance.
An independent everyday life without. Board of directors 12 members elected by the general assembly. Alongside the Board is the scientific committee whose members are leading medical, legal. The association operates a separate critic committee. But is estimated to provide services to To create a network for families of people with dementia and offer them information and emotional support. Develop support services for people with dementia and their relatives. Raising public awareness and knowledge about dementia, and the rights of people with dementia and their relatives.
Promote research into dementia.
Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel
Involved in political lobbying to promote the rights of people with dementia and their relatives. Incurable biomedical condition: "With the increase in life expectancy and the aging of the population, dementia has become a modern-age epidemic. Dementia is characterized by a decline in intellectual functioning and memory abilities, changes in behavior, and difficulty in performing daily activities".
Alzheimer Ethik e. Demenz Support Stuttgart gGmbH. Association members were asked about their involvement in PO activities, to what extent they are involved in PO decision-making, how satisfied they are with it, and who should be involved in organizational decision-making. They were also asked about their position and activities towards care in dementia and towards ethical-legal debates.
Interviewees were also asked about their personal link to AD advocacy e. Interviews were conducted in the office or home of the respondents or over the telephone when preferred by the interviewee and lasted between thirty and ninety minutes. Consent was obtained from all participants. Interviews were digitally recorded and verbally transcribed. Using a grounded theory approach to data analysis Corbin and Strauss , emergent themes concerning perceptions and self-declared aims of the PO were identified through inductive coding using ATLAS.
Interviews were first analysed thematically in each country and compared cross-nationally by the research team to uncover discursive themes connecting general representation styles found in the literature on disability advocacy with the particular context of AD, looking for themes and their variations recurring within and across organization type and country Denzin and Lincoln Collective voice for claiming individual needs in social and medical care; heteronomy as normality; fighting for legal opportunities to extend autonomy supported decision-making as alternative to traditional guardianship, advanced directives.
The only explanation I have is that there is no cure for this disease. It is impossible to beat the disease. This disease usually does not harm children or young people. It is not a disease such as cancer, with heroic cases, that you can win it over and be a hero. So apart from suffering and shame, it is not accompanied by anything. And the public is not making his [the patient] voice heard. They are becoming more and more introverted and try to survive.
PO for , board member, Israel. I do not want to be pathologized—I want to be seen as a human being and I want to be asked accordingly. In the consultation, I expect to be treated a certain way, that means the language they use when talking to me. How do you fight these symptoms? Overall, both POs, of and for, supported the biomedical model of dementia.
Many POs provided a platform for recruiting potential research participants.
The hope was that with better treatment and care, stigma and social exclusion will diminish. In the case of the German Alzheimer Association, their funding of research was related to improving care, housing, or communication. In Israel, EMDA did not directly support or fund any kind of research but provided links to existing research for participation.
However, many interviewees criticized the national policy for focusing too much on medical and hospital treatment and for setting very limiting criteria for social security support, and thereby overlooking the needs for specialized social support for caretakers as well as for persons with dementia outside the hospital context. Sometimes the words of a person with dementia come from the dementia and not from himself.
PO for , member, caretaker and service recipient, Israel.
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POs try to balance this loss of individual autonomy in several ways. According to their understanding, the collective voice replaces the individual voice in expressing needs and interests about care and treatments.
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Additionally, the POs engage in political debates in each country about advanced care directives or guardianship. However, there remains an ambiguity in this position, as the POs for strongly favour the family caretaker as the best proxy for decision-making. The few active members with dementia were characterized as fitting into the category of very early stage of dementia. The topical issue of predictive testing of prodromal dementia was not mentioned by the interviewees. PO1 for , relative and caretaker, member, Germany.
We have activities aimed to give patients quality of life, but we are more directed to providing the tools to enable caregivers and help them survive the process. This focus on the caretaker entails the risk that the diagnosed person herself is not given the necessary attention anymore or that the burden of, and concerns for, the family caretakers are overemphasized. Some German interviewees stressed therefore the need to organize separate activities for caretakers and for people with dementia. Alongside these topical overlaps, we also identified important nuances in themes and opinions between POs for —both in Israel and Germany—versus the German POs of see table 2.
These differences can also be classified along the three themes of 1 public awareness of dementia, 2 representative political practice, and 3 intra-family relationships. This is very important to me, the more you know about it, the less fear you need to have. I do not want to play the topic down, and it is certainly, when one has a diagnosis, primarily for the affected person and of course for the family members certainly incredibly devastating. But there is a life after that. PO5 for , relative and caretaker, member, Germany.
The POs of aimed at—literally—moving into society to raise awareness, showing their autonomy and agency despite the condition, by exposing the public to people with early stage dementia. Members with early stage dementia initiated several projects raising public awareness about the existing social mechanisms of exclusion and the fight for normalization—especially for patients in the early phases of dementia. Such activities included visits to schools and public institutions.
So the goal is to keep living independently as long as possible, so in his own living environment and it starts, for example, that a household assistance is necessary …. And then one gradually builds up the supply structure with some sort of shifts so that the relatives are relieved hourly … to a certain point, when it is perhaps not good any more to live alone at home, but it is then simply important that you move into a facility.
PO4 for , board member, Germany. Very important topics are, for example, assistive technology. When I feel worse, how I can help myself, yes, how I can help myself remain to live at home independently.
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