Topic: Living with memory loss

In response to Leslie’s question, I’m not sure that the decision to “go public” is a singular event in the life of the person with dementia, but rather a series of choices made over time. 

For instance, a woman with AD who is having trouble keeping up with the conversation in her book club might choose to withdraw from the conversation…or she might choose to say, “I’ve been diagnosed with early-Alzheimer’s disease and it takes me a little bit longer to process what you are saying.  Would you mind slowing down a bit?  I would really like to be a part of the conversation.”

The man who goes to an Alzheimer’s support group every Tuesday has a choice as to what to tell his friends about why he is unavailable to go out for lunch.  He might make an excuse of a doctor’s appointment or plans with his wife, or he might tell them about his condition and where he is going.

When opportunities arise to “go public” to a broader audience (i.e., to testify publicly or to be interviewed in the media), I see the professional’s role as being to present these opportunities in a way that makes it clear that the individual is free to say “no” or “yes” with no repercussions or changes in the relationship with that professional. 

I agree with Jesse’s point that it is important to take into account the needs and vulnerabilities of an individual when choosing whether and how to present the option of “going public.”  For example, I once had a client who was very eager to sign a publicity consent for her name and photograph to be used in the media in connection with the Alzheimer’s Foundation – but had also shared with me that she had not yet told one of her sons about her condition.  I gently suggested that she might want to hold off on such publicity until she reached resolution about whether and how to share the diagnosis with her son – and she agreed.  Some months later, once the issues of family disclosure had been resolved, she chose to become more public about her condition and has since appeared in several editions of our agency’s newsletter, as well as a piece about AD on a national news website.

Re: whether people with dementia should be offered the opportunity to go public for their cause, and if so who should offer this opportunity. The simple answer is, yes of course. But  I don't see that it should be some kind of formal process. Any or all of the people you menttioned could conceivably suggest that a person with dementia might want to speak out. But they should do so in the context of knowing the individual person in question and how this action would fit into their needs and vulnerabilities. As I suggested in my previous post, I do not think it is an ethical obligation for any individual with dementia to do so and no one should pressure them to do so. Really, I think it is a question of creating social space so that those who are moved to speak out will be able to do so. Everyone has role to play in that.

Re: history of other disabilities and who has invited them to speak out. I am not sure, but I think the story is rather more complicated than that. I think it's been a combination of people with disabilities demanding the right to speak out, and people in various roles helping to make the social space for that to happen. Then to there is the issue of potential manipulation by disease advocates, recruiting people with disabilities to serve as "poster children" who will provide compelling testimony following the party line.

I think all of these dynamics are at play in the emergence of early stage dementia advocates, and you are right that it is all the more important and problematic because of the nature of the disabilities with dementia. 

Finally, there are ethical issues related to individuals with dementia -- whose disease course may be atypical or certainly whose dementia is not far advanced -- speaking for the group of people with dementia as a whole 

I think there are no simple answers to these questions, save perhaps the fundamental ethical injunction to listen respectfully to those who are called to speak.....

I'd like to pursue the ethical/moral dilemma that surrounds the question of whether people with dementia should go public for their cause:

1) Is going public an option that should be offered to people in early stages of Alzheimer's? And if so, whose responsibility is it to present them with that option: the social worker? the familiy? others with dementia? 

2) From a historical perspective, do we know how such an option has been presented to people with illness and who did so?

It's a particularly important question for an illness like dementia, since those who have the illness suffer from some loss of judgmental powers.

Leslie Seifert /Opinion Editor/Newsday 

I think that Leslie’s post underscores a central dilemma facing people with AD and their families when trying to decide whether to be public about their condition.  On the one hand, people who “come out” can face stigma associated with their condition.  On the other hand, one of the most potent ways to challenge the stigma associated with Alzheimer’s disease is for more people – particularly those in the early-stages – to share their experiences publicly.  Ironically, the very stigma that early-stage advocates are trying to combat often discourages more people from joining the cause. 

Thank you for your discussion of this important topic.

Have you both seen the new research that was announced this week from the Mayo Clinic about mild dementia? It seems that the scope of the crisis is larger than researchers had anticipated. What should the Alzheimer's community do in light of these findings? Do you think this will change 1) perceptions of people with memory loss and the culture of pathology surrounding it, 2) the political and social landscape for medical research?

For more, read our blog entry about it here (we also link back to Jesse's comments in this forum).

Alana -- some further thoughts regarding the issue of "neurodiversity" – I think you are absolutely right that people with dementia have not defended dementia as merely a difference rather than a pathology, as have some people with autism and other neurological “disorders.” As I pointed out in my previous post, this is because dementia is progressive, and defined by deterioration from a previous level of cognitive functioning where autism manifests itself at an early age and remains a stable condition around which a person can progressively improve their functioning. There seems a kind of logic to pressing the idea that a brain state like autism is merely a natural human variant rather than a pathology to be eradicated (and some people with autism and other mental conditions have strenuously objected to the idea that they need to be cured) that seems inapplicable in the case of Alzheimer’s and other progressive dementias.

But how then do we keep from stigmatizing people with dementia? Or do you think that a person with dementia is indeed less of a person than they were before, or less of a person than those who have not been diagnosed with dementia? If not, then on what basis do you find their equal value and equal dignity?

If we are really to avoid stigmatizing people with dementia, we will need to stop valuing people according to their productivity or their cognitive capacities. We will be challenged to value people in more fundamental ways, ways for which our society today scarcely even has the language to describe. We’re challenged to re-think what it means to be a person, and challenged to re-orient ourselves to our world. I do not know if I am up to this challenge, but I know I need to try. And I know I am going to need help. I am thankful for the people I know with dementia, who I think are uniquely able to help us meet these challenges.

Alana – It may be that the dignity of the person with dementia and the push for a cure are not necessarily mutually exclusive, but the fact is that historically there has been tension if not explicit conflict between them.

The case for research funding for Alzheimer’s was made in large part by representing Alzheimer’s disease victims in harshly stereotypical and stigmatizing terms. To win funding for a dread disease, afrer all, you have to make people really dread it – and people have certainly learned to dread Alzheimer’s.  Moreover, advocates for research have frequently used the high current and projected cost of Medicare and Medicaid payouts for Alzheimer’s patients to argue that finding a cure is an economic imperative. The common sense that has emerged in the media and in policymaking circles is that not much of consequence can be done to make the lives of people who now have dementia better (after all, they are experiencing “the loss of self,” victimized by “the great mind robber” and are subjecting their loved ones to “a never-ending  funeral” -- all phrases widely used in the Alzheimer’s movement) , and it is too expensive to provide the kind of quality supportive services that would make life for they and their families much better. Our only real hope (so the argument goes) is to find a means to prevent or cure this scourge. Not surprisingly given this calculus, almost all of billions in federal money spent so far has gone to support research for “the future” rather than the supportive services and technologies that could help people live to life to the fullest “in the here and now.”

As I’ve said earlier and in my column, I have great admiration for the work that Alzheimer’s advocates have done to create supportive networks and raise the public awareness that made the massive research program aimed at prevention and cure possible. Moreover, many in the Alzheimer’s movement have been strong advocates for long-term care and other important reforms. But whatever case they tried to make for care was undermined by the logic sketched out in the paragraph above. To get beyond this, we need to reckon with the problems that are associated with the campaign as it historically has unfolded.

Maybe we can build the Alzheimer’s awareness movement that calls for both research for a cure and funding for care that you call for.  But we will have work to consciously undo the stigmatizing logic that has historically been the basis for the highly successful campaign to fund brain research, and we will also have to be more realistic about when and whether that research is going to pay off. If people with dementia must struggle to adjust to the loss of cognitive abilities, maybe we as a society (and in the Alzheimer’s movement) should try to abandon our naïve dreams of a simple, cheap, technical solution to complex human problems. I do not think that funding for brain research should cease, but I do think we need to shift our priorities. As it stands now, social and humanistic interventions rooted in the continued dignity and value of the person with dementia are scarcely on the policy map. That has to change.

In response to your question, I’m not sure that I see the idea individual dignity and the objective of cure as mutually exclusive, or even necessarily competitive goals. 

In my work with the Long Island Alzheimer’s Foundation, I have yet to meet a person with AD who does not long to regain the abilities that have faded as a result of this disease.  While many are bravely adapting to the changing realities of their lives, they face many daunting challenges on a daily basis. 

In the early-stages, many live with the frustration of not being able to express themselves as fluidly as in the past.  Declining organizational skills make it difficult to continue professional pursuits, and the slowing down of judgment and decision-making eventually make driving and other complex tasks unsafe.  In the moderate stage, the person with AD may live with the anxiety of not recognizing once familiar surroundings.  The individual will no longer be able to do many activities of daily living independently, yet he or she may lack insight into this decline and resist efforts of family or other caregivers to provide assistance.  In the late stage of the illness, AD causes incontinence, loss of coordinated muscle movement, and eventually death. 

People with Alzheimer’s disease should be given every opportunity to live life to the fullest.  Support groups, activity programs, and adaptive technology that support and emphasize the individual’s remaining abilities are crucial.  Yet a respect for and investment in programming and adaptations for people with AD should not replace a commitment to scientific discovery, improved treatments, and eventually cure.  The Alzheimer’s disease awareness movement can and should advocate for both! 

People with Alzheimer’s disease deserve for their condition to be given the same sort of investment and commitment that other diseases receive.  We would not question researching a cure for cancer by calling it “cellular-diversity” or question researching a cure for HIV/AIDS by calling it “immuno-diversity.”  Just as with these other illnesses, Alzheimer’s disease needs a multi-pronged approach.  Services and adaptations allow people to lead richer, fuller lives in the here-and-now…while research provides hope for the future. 

Thanks for your replies. To riff off of my earlier question, I'd like to explore the idea of "pathology" vs. "diversity" a bit more.

We speak broadly about publicly acknowledging dementia as an empowering or liberating experience on a personal level. But in terms of what the movement itself wants to achieve, how close are we to finding a unifying agenda? It seems that even within the neurodiversity/mental health empowerment movements, there's some division over what to advocate for and how--balancing the need for accomodation with the right to independence and freedom. Jesse's thesis is framed around advocacy for treatment as well as just activism to increase visibility. For people with progressive forms of dementia, isn't there tension between advocating for the recognition of the patient's individual dignity, and at the same time advocating for a "cure"? It seems like those two goals straddle that division between pathology and empowerment.

Have the two of you drawn any insights about this from your research and interactions with patients? 

I think Jess’ point about the widespread risk/fear of developing dementia in later-life is important in looking at social attitudes toward people with Alzheimer’s disease (AD) and other dementias. 

In my experience working with clients with early-stage AD, many have had the experience of sharing their diagnosis with a friend or acquaintance – only to have that person distance himself from the individual with AD.  Clients have commented to me that some friends have behaved “as if they think it is contagious.”  While these friends may not literally consider the person with Alzheimer’s disease contagious, seeing cognitive disability and decline in a previously high functioning person can play into friends’ own sense of vulnerability to the possibility of developing this “dread” disease.  Given these painful personal experiences, many early-stage clients are reluctant to be public about their condition for fear of being treated differently. 

Secondly, given the progressive nature of the disease, popular perceptions of AD are often associated with individuals in the moderate to late stages of the disease.  Clients with early-stage Alzheimer’s disease, who are still quite functional in many ways, are often reluctant to share their diagnoses for fear of being seen only or mainly in terms of their disability, rather than recognized for the many skills, abilities, and aspects of self that remain intact.

Nevertheless, there are many possible “rewards” to being open or public about one’s condition.  Public advocacy by persons with dementia can challenge the stigma and misperceptions often associated with early-stage Alzheimer’s disease.  Many clients express relief at no longer needing to “hide” their condition by trying to cover up for memory lapses or other cognitive difficulties.  In addition, participating in education, advocacy, and outreach to others in need can be an empowering experience.

Looking over what I said yesterday, one additional thought occurs to me.

Re: my point that Alzheimer’s dementia seems more intuitively pathological than autism and other conditions that have been part of the neurodiversity movement. I’ll stand by that as a description of widespread attitudes toward these conditions. But ironically, a better case can be made that what we are calling Alzheimer’s is part of a natural distribution of human differences. Though  as far as I know the brain state associated with autism is not clearly defined, autistic individuals seem clearly different than “normals” and remain so throughout their lives – thus one could argue (as medicine and most of society does) that the difference is that something is “wrong” with them. In the case of Alzheimer’s, there is a well-defined brain pathology associate with it – the amyloid-protein plaques and tau-protein tangles that are found in the brain at autopsy after a patient has died. But post-mortem studies of large numbers of randomly selected brains have demonstrated that the plaques and tangles associated with dementia are found in all people’s brains as they age, albeit typically (though not universally) in higher degrees for people with dementia than those without. Similarly, clinical studies have shown that most individuals experience some cognitive decline from their previous functioning as they age, though this is typically insignificant compared to people who are diagnosed with dementia. On this evidence, one could argue reasonably that Alzheimer’s represents an extreme variant of normal human aging, and that we would all likely get it if we lived long enough.

Implications of this for the discussion here: 1) The distinctions we make about whether human differences are “pathological” or whether they are a variation within the “normal” are always and inevitably as rooted in social values as they are in biology. 2) Society should pay attention to people with dementia because the experience is to some degree universal.

Let me try to answer some of the questions you pose by putting dementia and other cognitive disorders in the context of the broader disability rights movement.

Historically, the disability rights movement was led by people with physical disabilities related mostly to mobility, sight and hearing.  In broad terms, the argument they developed was that people with disabilities -- as fully competent and morally responsible persons – ought to be able to enjoy their rights and fulfill their responsibilities as citizens. Society’s failure to make reasonable accommodation to their physical differences prevented people with disabilities from doing so. This basic idea of the disabled person as a fully competent and morally responsible person to whom society owes a reasonable accommodation to allow them to fully enjoy their rights and responsibilities is at the core of the 1990 Americans with Disabilities Act (ADA).

The status of people with mental disabilities in this formula was somewhat ambiguous. The disability rights movement clearly recognized the right of people with mental disabilities to treatment and to educational opportunities – hence the ADA’s mandate for special education programs and inclusion of students in public schools. But the broad disability rights movement did not immediately challenge our society’s historical tendency to deny that people with serious mental disabilities were competent citizens and morally responsible people.

This restrictive definition of competence and personhood at the core of the disability rights movement was challenged in the late 1990s by people with developmental neurological disorders, in particular autism but also bipolar disorder, ADHD, dyslexia and others. They developed an argument around “neurodiversity” – the idea that the kinds of neurological development represented by these conditions are normal human differences that ought to be treated with the respect as other kinds of human difference. At risk of gross oversimplification, I’d suggest that the mainstream disability rights movement was rooted in a traditional liberal notion of “the melting pot” in which all people are fundamentally the same despite relatively superficial differences that can and should be overcome through social interventions. The neurodiversity movement is rooted in the multicultural ideal that the differences between people are more fundamental and that society should make room for these differences rather than demand conformity. The neurodiversity movement is of course particularly challenging because it calls into question core values at the center of what it means to be a competent citizen and morally responsible person in our society – values like rationality, independence and productivity.

As people with dementia are becoming more visible and speaking for themselves, we can see a similar sort of argument developing. But there is at least one additional challenge. Autism and other conditions that have been brought under the concept of neurodiversity are conditions that typically appear early in life and remain stable, thus making an intuitive case that they are within the normal range of valuable human differences. Dementia represents, by definition, deterioration from a previous state of cognitive functioning and thus seems to be intuitively regarded as more of a pathological loss than a normal human difference – and this is borne out in the autobiographical accounts I have read. While most authors with dementia make their peace and find fulfillment in life with dementia, none of them are thankful for it.

Yet in forcefully testifying to the continued dignity and meaningfulness of their lives I believe people with dementia are making a profound contribution by challenging the overwhelming and problematic dominance of some values in our society. To find meaning and dignity in the experience of dementia, and for us to make room for people with dementia to live a meaningful and fulfilling life, we will have to embrace not only diversity but decline. In so doing, we may re-discover and re-value some values that have been denigrated by the modern imperative of technological progress and productivity – patience (to temper our ambition), acceptance (to temper our arrogance), and wisdom (to complement our increasing technical intelligence). These will be important values for us as we face not only the challenges of dementia, but looming environmental challenges like global warming. We

Thanks to Alana and Jesse for participating in this roundtable. A question for both of you, which I imagine may elicit very different answers:

How does this emerging movement led by people with dementia differ from other patient advocacy movements? What are some potential obstacles to forming an organized, cohesive movement for people with a cognitive or mental handicap? Conceivably, while many early-onset Alzheimer's patients can be very active and engaged with each other and with the broader public--and provide a powerful first-person voice for an often misunderstood community--they will at some point not be able to function that way. What are the implications of that, politically, socially and clinically? How might this movement sustain itself and still remain grassroots and patient-led?

Can you compare the advocacy of people impacted by dementia to that of other types of patients--such as public campaigns around autism, or mental health activist movements that have challenged stereotypes of patients as victims?

My thanks to Michelle Chen and Leslie Siefert for inviting me to be part of this. I’m very glad to do it.

Since it is perhaps unusual to find a historian in this role, I’d like to introduce myself to the forum community by describing how I came to be interested in this topic and the direction my research has taken. After graduating from high school, I worked for nearly 15 years as a nursing assistant in hospitals – most of that time on geriatric wards where I often cared for patients with dementia who were my favorite patients to work with. In the early 1980s, the concept of Alzheimer’s disease was replacing older notions of senility as the dominant way of thinking about this disease. I recall an in-service training session where the nursing assistants were introduced to this new way of thinking about cognitive deterioration in old age – that we should not think of it as part of aging, but as a disease. When I eventually found my way to graduate school with an interested in aging as a socio-historical phenomena, I recalled this transition from senility to Alzheimer’s disease in my hospital experience and thought that such a significant change would be worth better understanding. It seemed ironic to me that professional and popular discourse about Alzheimer’s, whose most dreaded feature is the loss of memory, would proceed with so little understanding of its past.

 So my research came to focus on understanding this as a socio-historical phenomena – when and why  did we begin to think about age-associated progressive cognitive decline as perhaps the most frightening of all diseases? Over the long term, both social attitudes and medical concepts have changed remarkably, so the answer turns out to be fairly complicated and interesting. But the broad historical pattern I’ve discerned is that as our society has become increasingly individualistic and socially fragmented, the symptoms of senile dementia have become more frightening. As the notion of selfhood has grown increasingly problematic since the mid-nineteenth century, the loss of the ability to independently sustain a coherent self-narrative which dementia entails has come to be perhaps the most frightful of all losses. Dementia haunts the landscape of the self-made man.

The emergence of Alzheimer’s disease in the 1980s is the culmination of the growing prominence and frightfulness of senility in American culture. I admire the many advocates whose hard work put Alzheimer’s disease on the research agenda and helped many people by creating supportive organizations like the Alzheimer’s Association, but in making the case for Alzheimer’s they created a stereotypical and deeply stigmatized image of the Alzheimer’s victim. Think of some of the catch phrases created for Alzheimer’s – “the great mind robber” or “the never ending funeral.” Mindless, already dead despite the troubling persistence of the body. That is stigma at its most extreme.

I certainly do not want to minimize the difficulties of this condition; I saw too much as a paid caregiver for that. But over the past decade, I think a slow change has begun in social awareness.  As we’ve begun to hear more about the experience of “Alzheimer's from the inside out” (which is the title of Richard Taylor's insightful autobiographical account of having the disorder) we’re increasingly able to appreciate that life with Alzheimer’s can be very rich with rewards as well as sorrows. In my view, the next chapter in the history of senility and Alzheimer’s is not going to come from the laboratories – though I certainly think scientific research on dementia is valuable and ought to be supported. Rather, it’s going to come from the countless individuals with dementia, their families and caregivers whose struggles and triumphs are changing the meaning of this condition. I expect I will learn much from those who share their experiences on this forum. In my view, you are making history.

With increased awareness of the early symptoms of Alzheimer’s disease and advances in diagnostic techniques, many people are being diagnosed with Alzheimer’s disease and related dementias while still in the early-stage.   While these individuals have some deficits in short term memory and other cognitive skills, many of their abilities remain quite intact.

In many communities, there are opportunities for people with Alzheimer’s disease and their caregivers to receive support, information, and avenues for connection that can be vital to living with this condition.  Organizations, such as the Long Island Alzheimer’s Foundation in Port Washington, provide client and caregiver support groups, activity programs, and social functions so that families living with this disease do not have to go it alone on this most challenging of life’s journeys.

Moreover, people living with early-stage Alzheimer’s disease can be powerful advocates for the resources and organization needed to create and expand such valuable programs and services in their own communities, as well as advocates for research funding and the adoption of favorable policies on the local and national levels. 

We hope that this forum will be a starting point for you in reaching out to make connections and receive the information, resources, and support to ease the burdens of day-to-day life with Alzheimer’s disease.