Our analysis revealed the following three common topics. These are broadly shared and uncontroversial for Alzheimer advocacy in both countries: fighting social stigma, balancing the loss of individual autonomy, and the well-being of family caretaker (see table 3).
Fighting Social Stigma
Overall, our interviewees in both countries stressed that according to their perception, dementia is a “special” illness, highly associated with social stigmatization because of the progressive and irreversible influence on cognition that affects the personality of the person with dementia. Interviewees highlighted the differences between AD and other (now) less stigmatized illnesses such as cancer. This point was brought up by several interviewees.
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)
Overall, fighting stigma was perceived as a main goal for all the POs we studied, as demonstrated by the following quote of an interviewee with AD:
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. It should not be a language, for example, that goes as follows: “you are suffering, you poor, your mind is dwindling every hour, this deprivation, this perplexity. How do you fight these symptoms?” This is a language that shows me that they pathologize me and— they do not provide support, they take all away from us.” (PO2 of, member with dementia, Germany)
The problem of social stigma led some office holders to mention their struggle to recruit new members, because being associated with the PO may exacerbate the member’s stigma.
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. Therefore, involvement in, and collaboration with, scientific research, including biomedical research, was regarded positively, even though the POs’ own direct financial investments in biomedical research were limited. 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.
Autonomy and the Caretaker
Another theme shared by all interviewed PO members was the effect of the diagnosis of dementia on the autonomy of the diagnosed person. First, a diagnosis may lead to heteronomy, that is, being governed by third parties (e.g. family members gain the power to decide in minor and major life decisions, including decisions over driving, mobility, housing, and financial issues). A typical comment was:
[people with dementia] experience this as something very bad when they say: “As soon as I have this dementia … in the sense of the diagnosis … my relatives do not take me seriously anymore, suddenly decide all things, therefore terribly restricting my freedom.” This must be clarified from the beginning that too much of this approach under the notion of care—“It’s me who decides now, I do not believe you are able anymore”—it is very, very discriminating for the person affected, I believe, that this makes him more incapacitated … (PO3 of, board member, Germany)
Secondly, since AD is understood as a progressive neurodegenerative disease that will result in loss of memory, planning, orientation, and assessment, it makes the interpretation of the patient’s wishes more challenging:
Sometimes the words of a person with dementia come from the dementia and not from himself. (PO for, member, caretaker and service recipient, Israel)
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. Additionally, the POs engage in political debates in each country about advanced care directives or guardianship. This engagement can also be interpreted as “extension” of the autonomous individual voice (especially against the paternalism of professionals) to ensure (more) self-determination of the person with dementia. However, there remains an ambiguity in this position, as the POs for strongly favour the family caretaker as the best proxy for decision-making.
Alzheimer’s disease was framed as a fatal disease characterized by loss of accountability and therefore mainly associated with obvious, already developed symptoms. 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.
It was expressed as typical of the condition that both patients and their families (as caretakers) are phenomenologically “affected by” AD. In contrast to other chronic diseases such as cancer or HIV where family members are rarely mentioned as an affected group, for dementia this was different. Family members who act as caretakers are seen as almost similarly affected:
… although we always argue, dementia is actually a disease of the relatives because they suffer quite a lot. (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. (PO for, board member, Israel)
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.
Understanding Dementia in POs Of and For
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.
Regarding public awareness of dementia, POs for and POs of differed in the detailed characterization of how dementia should be framed. Germany and Israel POs for stressed a rather “holistic” approach of medical and social support for all affected persons, including patients and their relatives as caretakers. They also called to fight the tabooing of the disease as such and to provide comprehensive information for lay people about the progressive course of the disease.
… to get the subject a bit out of the taboo zone. 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.
One German interviewee of a PO for stressed that normalization needs to be embedded in a dementia-friendly community and to allow ambulant support as long as possible:
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)
In slight contrast, the POs of stressed particular assistive technology for ensuring independence. As the quote indicates, the idea that sooner or later a care home will be the logical end, is yet not so self-evident.
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. (PO2 of, member with dementia, Germany)
While we gained the impression that POs of do benefit practically from members and representatives being diagnosed early, neither them nor PO for expressed a clinical/medical interest in early detection of dementia via biomarkers or genetic testing.
The difference between national neuro-cultures and self-advocacy became most visible in the understanding and practice of representation. At one end of the spectrum was the Israeli PO for which was not ready to have self-advocacy at all:
It fits American political correctness, but elsewhere? Then I ask you—what are they useful for? What contribution do they have to make? What can they contribute? I do not have a concrete example of such a contribution. I’m sceptical about that. (PO for, board member—non-caretaker, Israel)
The German POs for were more positive about self-advocacy (some included persons with dementia in their advisory board) but defended a mixed, complementary approach:
The good thing is that nowadays the people with a dementia diagnosis can be diagnosed very early (…) and if you talk to the people who are early-affected, who are also able to express themselves, then they clearly say, “we speak here with a loud voice, but we also speak for the people who may already not have strong words, who do not find the words anymore.” (PO4 for, board member, Germany)
In contrast, POs of stressed an ideal of self-representation:
… it was not a topic at all here in Germany until at least some years ago (…). It was observed with disbelief and not understood what we actually aimed for; how we come to believe that those who are affected by dementia can actually think or articulate themselves. (PO3 of, board member, Germany)
Interviewees from POs for did not ignore potential conflicts that arise when caretakers and relatives speak on behalf of the patient. However, they either stressed the incapacity of the patients or the burden of caretakers:
Their voice is always through the family, unless there is a direct connection between the volunteer [an unpaid helper trained by the PO, the authors] and the patient, which is also usually a surprise to the family, whether it’s in terms of its capabilities, whether it’s things that the family thinks that he stopped doing and suddenly they discover that with the volunteer he still does. Often the volunteer comes in, usually in the early stages of the disease, and the patient is still less expressing himself, but a family member is expressing his wishes for him! So there it is. So really our volunteers are our ambassadors in the field. (PO for, office holder 3, Israel)
In contrast, interviewees from POs of explicitly and critically reflected upon problems with family members that even led to intra-familial discrimination. For them, it was important that family members acknowledge the person with the resources they still have. Interviewees from POs for also pointed out the emphasis on expectations regarding the competences of the caretaker (as attentive, trustful, creative, etc.). Interviewees from POs for tended to focus only on social discrimination and located the problem in the psychological denial of persons with dementia to recognize their limitations. Importantly, from a cross-cultural perspective, and though holding different positions in the context of intra-familial relationships, both POs of and for in Germany shared a resource-oriented rather than deficit-oriented approach.