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  • I’m Lynn Jackson and I met my colleague Christine Bryden from Australia in an international Internet-based support group for people with dementia, called the Dementia Advocacy and Support Network International. We are both people with dementia who know what it is like to become the “Untouchables” of society. Daily we feel the stigma of dementia - it would be so much easier to have breast cancer. The issue for this workshop is the stigma of dementia, or of Alzheimer's Disease (which is the most common form of dementia). Why does the stigma arise? What can we do to combat it? This workshop will explore the stigma of dementia, sharing the perspectives of people with dementia, their families and friends , and the professionals who care for them. You might see I have used the word dementia 10 times on this page alone - but it is for a reason. We need to start talking about it!
  • We were transformed at that terrible moment of diagnosis in our 40s from a valued member of society into an “Untouchable”. We were labeled with the stigma of dementia. Why is this so? What is the problem? Is it our self perception of being no longer valued? Of being a lesser person? Of being someone without a future of hope and possibilities? Or is it your problem? Do you fear us? Do you not know how to talk to us? Do you not know what we might do next and how to respond? Are you embarrassed about telling your friends and family about our problem? Is the stigma to do with stereotypes about the elderly? Do we think it is just a normal part of aging? Is memory loss and confusion what we must expect as we grow older? Is the stigma linked with jokes about “Old-Timer’s Disease”? Or is it the stigma of mental illness and the fear of that unknown? Or is it that you can’t see that bits of our brain are missing and other parts are diseased, so that we are having difficulties functioning? Maybe we both don’t realise that there are powerful drugs available to help us function better?
  • The Alzheimer Disease International (ADI) charter has been recently revised, with input of those living with dementia, making in particular the following statements: A person with dementia continues to be a person of worth and dignity, and deserving the same respect as any other human being. People with dementia need a physically safe living environment and protection from exploitation and abuse of person and property. People with dementia require up to date information and access to coordinated medical, psychological, rehabilitative and welfare services. Anyone thought to have dementia needs prompt medical assessment and those with dementia require ongoing care and treatment orientated to maximising their quality of life. People with dementia should as far as possible participate in decisions affecting their daily lives and future care. But the issue of stigma remains, despite this “bill of rights” that gives people with dementia their dignity and respect. We face stigma from the public, even from doctors, as we face the diseases that result in dementia.
  • How do we change the public’s attitude about dementia? How did the AIDS/Cancer movements do it? What I took home from the Barcelona ADI Conference was that there was still too much stigma associated with giving and receiving a dementia diagnosis. Doctors I spoke to were unwilling to give their patients a diagnosis. So we need to improve the education of medical doctors for early diagnosis and treatment. Where does denial come into this? The hidden nature of dementia forces people who have been diagnosed to conceal this extremely significant life happening. As soon as anyone does go public, there is that immediate 'them' and 'us' differentiation with its stigma connotations. The public have negative images and an uncertainty of the unknown. Is there sometimes a fear of contamination - or 'catching' the condition? Just like lepers of the old world, we are the unclean, the untouchables, of the new world.
  • To name an illness usually gives a feeling of greater control. But naming dementia has a very different impact. Traditional healers know the importance of naming the illness and explaining the cause in ways that are readily understood. They also understand the importance of stigma. Their explanations are generally of a kind that removes blame from the patient and lessens stigma. Doctors also name diseases and explain causes. However, the names they use and the explanations they employ are not always easily understood by patients or by other people. Doctors do little to address stigma. Misunderstanding of medical terms, and conflicts between medical concepts and cultural beliefs, can lead to an increase in stigma. The Big “S” leads to a whole load of other “S” words, such as secrecy, shame and silence. Shame leads to isolation, brought about through making no new friends and the loss of old friends. Silence adds to this isolation and leads to family tension from within and without. Secrecy has an impact in health because people with dementia feel less empowered, are fearful, and see their doctors later than sooner. This reduces their chance for available therapeutics to be beneficial.
  • Early detection improves outcomes because informed people do better. There are plenty of treatment options, but we need to avoid denial if we are to take advantage of them. Doctors need to overcome the concept of stigma, and learn to give patients, not carers, the diagnosis and prognosis. This will empower us, and begin to reduce stigma and the tacit collusion that occurs. Mainstreaming of dementia services would begin to address the secrecy of dementia, the shame attached to this disease, which like any other needs treatment and care. Remember "If you live your life out of memory, you live out of history. That's what once was. If you live your life out of your imagination, you live out of potential. That's what can be" Old Chinese proverb Dr Roger Bullock Kingshill Research Centre roger.bullock@kingshill-research,org
  • One of my fears is that people may mock me and ridicule because of behaviors that come with my disease. I am doing all I can to ensure this will not happen. I want to honor the person I am slowly losing in myself. I hope and pray that the people who love me will do so even when she has disappeared. The disease changes how and what we do, but it does not change us. It does not change who we were or are as a person. Dementia is seen as a 'loss of self' - an inevitable process of decline resulting directly from pathology in the brain and rendering the person with dementia incompetent and incapable. The twin concepts of loss and incapacity still constitute the dominant public perception of dementia. This is one reason why the diagnosis of dementia in itself results in stigma and shame. People with dementia are increasingly seen as having the right to be heard and taken seriously. Personal accounts of the onset of, along with research into the experience of developing dementia, present a picture of people trying to find meaning in what is happening to them. They are attempting to work out ways of living with dementia that allow them to retain useful roles and interpersonal connections. But we are developing a 'voice’, banding together around the world to help one another through mutual support and collaborative activity. Our voice is having a real influence at the international, national and local levels.
  • Alzheimer Scotland had an ‘Anti-stigma’ conference in June 2002, launched this great help card, and made the following key recommendations: Public service staff and others serving the public should receive disability awareness training that includes dementia Customer care policies should take account of the needs of people with dementia Local community groups should inform themselves and disseminate information There should be awareness training about dementia and mental health in schools The media should use positive images There should be dementia care training for primary health care teams, particularly on early identification to enable access to drug treatments and advice on legal and financial matters There should be more specialist community based projects to provide support workers for people in the early stages of dementia.
  • 81 per cent of Canadians think “people would look at me or treat me differently if I were diagnosed with Alzheimer Disease." A friend of mine, Marilyn, says that stigma definitely exists in her world. She carefully selects who in her social circle to tell about her disease, to protect herself and her family. And other Canadians speak for themselves in the comments on the slide. One very telling comment is that we need to watch what we say or do if people around us know that we have dementia. It’s OK if they don’t know as they will not be watching for us to make a mistake, to show evidence of having this untouchable disease of the new world. So we don’t tell, we keep quiet, so we can relax and be ourselves. But we have a right to be open People with cancer do not have to edit what they say or do in front of their friends who know about their diagnosis. What is so different about a disease of our brain, particularly just after diagnosis? We don’t change overnight into someone different.
  • I found the Canadian Psychiatric Association - Presidential Address - December 2001 Overcoming Stigma ( http://www.cpa-apc.org/publications/archives/cjp/2001/december/president4.asp) very relevant to this workshop. I quote some extracts: “I want to talk now about the effects of stigma. ... I think of the Ethiopian proverb, “He who conceals his disease cannot expect to overcome it.” How does stigma affect morbidity? ... Stigma reinforces denial and minimization. ... [and is] the most powerful obstacle to seeking care. ...Stigma also affects treatment adherence. .... How about stigma and families? Some families (or members of families) are ashamed of their loved ones with a mental illness. They are afraid to talk openly about mentally ill members, they can’t recognize or accept the symptoms of their loved ones, or they seem paralyzed or remiss at getting them into treatment. But stigma has even more pernicious effects. Stigma kills. We must watch our language. ... Our medical colleagues do not refer to individuals as “a pneumonia,” “a brain tumor,” an “AIDS.” When we call someone a “bulimic,” we are conveying, inviting, and reinforcing stigmatized and stereotypic images of someone with an illness—and a shameful one at that. For the individual and the family, that hurts.” Speaking now as a person with dementia, labels such as “demented” or “ dementing” demean and stigmatize me.
  • Let’s stop denying that stigma exists and being the three wise monkeys who hear no evil, see no evil, and say no evil. Let’s hear about the problem, see it for what it is, and speak about it. Doctors, governments, professionals, families all need to change - but how? What are some of you doing to fight the stigma? Are there awareness plans in progress? Maybe it is all in the word “dementia” or Alzheimer's Disease and all we need to do is find a new word! I doubt it, but let’s not rule out any options in this workshop. Let’s brainstorm and share our ideas openly, both as people with dementia and those who care for them at home and professionally. Let’s come up with ideas on how to address the killer issue of stigma. Thank you.


  • 1. Why are we the “untouchables”? A workshop about the stigma of dementia Lynn Jackson and Christine Bryden Dementia Advocacy and Support Network International
  • 2. Transformed into an “untouchable”
    • Diagnosis transforms us into labeled people, into society’s untouchables
      • Is it our self perception or yours of us?
      • Is it the stigma of mental illness and the fear of that unknown?
    • You can’t see that our brain is diseased, so that we are having difficulties functioning
  • 3. ADI charter
  • 4. Stigma leads doctors as well as the public to deny dementia
    • How do we change the public’s attitude?
    • How did the AIDS/Cancer movements do it?
    • How do we avoid the stigma of giving and receiving a dementia diagnosis.
    • Do you think you’ll catch it?
  • 5. What’s in a name?
    • Stigma, the BIG S
    • Leads to other S words:
      • Shame
      • Silence
      • Secrecy
    • The word dementia - "demented”, senile dementia
    • Any bodily sign denoting something bad.
    • A mark of disgrace, shame or discredit
  • 6. What can be done?
    • Early detection
    • Provide all possible treatment options
    • Give patients, not carers, the diagnosis and prognosis
    • Mainstream dementia services
    • "If you live your life out of memory, you live out of history. That's what once was. If you live your life out of your imagination, you live out of potential. That's what can be"
  • 7. Dementia does not change who we are
    • Dementia is seen as a 'loss of self’, and a loss of competence and value.
    • We are living with dementia, linking together internationally to develop a 'voice’ and we are being heard.
  • 8. ‘Help card’ for people with dementia (Scotland)
      • I have an illness called dementia. I would appreciate your help and understanding. Due to my illness I sometimes get confused, feel lost, forget things, can’t manage money, can’t make myself understood. I like to be independent but I sometimes need help. Here’s how you can help me
      • Be patient and try to understand me
      • Ask how you can help me.
  • 9. What about in Canada?
    • We are still the same people.
    • once a person has Alzheimer Disease, it doesn't mean you push them off.
    • one of my doctors said "don't (tell people)" because the more people who know, the more (I'm) put in a position of being on guard all the time.
  • 10. “He who conceals his disease cannot expect to overcome it.”
    • How does stigma affect morbidity?
      • Stigma reinforces denial and minimization
      • Stigma is a powerful obstacle to seeking care and affects treatment adherence.
    • How about stigma and families?
    • Stigma has even more pernicious effects. Stigma kills.
    • We must watch our language - don’t call us “dementing” or “demented”!
  • 11. Let’s stop denying stigma exists and do something about it!
    • Maybe we can agree there is stigma around dementia
    • Then what do we do about it?
      • Doctors, governments, professionals, families all need to change
      • but how?