Dementia Is A Condition We Experience Not A Disease
And, we do all this despite knowing that dementia is not a disease but a condition that can result from a variety of diseases and any number of life events, even simply from lifestyle choices and despite knowing that all humans in all stages of life and emotional development display exactly the same behavioral symptoms we attribute to dementia.
But most egregious of all, we persist in using the biomedical model and prescribe psychotropic drugs for treatment despite knowing that those whom we have diagnosed are losing the very skills that would enable them to protect themselves.
What Is It Like To Deal With The Reality Of Alzheimers
Observation and self-report can tell us quite a bit about what it is like to live with Alzheimer’s or another form of dementia. More and more people are sharing their stories after diagnosis which gives insight into this illness. Speaking openly about the experience of the disease helps overcome a negative stigma. Here are some of the experiences that people with dementia have reported:
My abilities to be able to cook are steadily diminishingI am losing my ability to sequence, plan, prepare and cook. I hate packing I pick up one thing, put it down, look for another thing, look for the first thing you put down and its not there. You end up not knowing where anything is. You try to be logical, but you cannot be logical when youve got Alzheimers.
They talk about the losses you get with dementia, and yes there have been many losses, but not so with my hearing. My hearing has been heightened, almost painfully. I can be out having a meal and the noise gets louder its just like a crescendo, its terrible. I cant stand it and I just want to finish the meal and get away.
I seem to live in a state of constant anxiety, of not being able to cope with crossing the road, going shopping, having a shower. The day-to-day things have been more and more stressful and causing me panics. What does it feel like when I know that the slow progression is creeping in and getting more and more frequent? Frightening. Scary. I doubt myself.
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When I’m Out In Town Enjoying A Cup Of Tea I Can Forget Things And What I Was Saying
‘You see people looking, and I know theyre thinking ‘What’s wrong with her?’ If they stare I ask, ‘Do you want what I’ve got? I’ve got dementia, I don’t think you’d like it’. They quickly apologise and I can then carry on my conversation.
‘The public need to be told more about what we go through, and how dementia affects us. I’m happy to talk and tell them.’
Seeing Dementia As A Disease Leads To Stigma
At present, we still talk about dementia as if it is a disease, although it is really a condition, one in which people progressively lose certain cognitive skills.
Seeing dementia as a disease leads us to apply the biomedical model. We refer to people as having developed dementia, and then begin to look for and catalog symptoms that we can identify to demonstrate its presence. Finding no physical manifestations, we label what we can find: changes in their behavior. We call these symptoms dementia-related behaviors .
Having identified a disease and its symptoms, we need treatment and a cure, and pursue both, yet currently we have neither. And so, having no treatment at hand to help people return to their normal pre-diagnosis selves, we substitute an array of psychotropic and mood-altering drugs that do nothing moreand nothing lessthan mute their ability to express themselves and their reactions to the changes that are occurring within them.
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Limitations Of The Study
Before drawing conclusions, limitations of our study should be mentioned. Methodologically, the use of convenience sampling limits the generalizability of the findings because the participants may not be representative of all adult child caregivers in Israel. Moreover, as mentioned above, findings about adult child caregivers might not be generalizable to spouse caregivers of persons with AD. Additionally, due to the cross-sectional design of the study, it is not possible to determine causal relationships among the variables examined. Finally, the importance of stigma on caregiver burden should be examined in other cultures besides Israel.
Stigma In Dementia: Its Time To Talk About It
Despite its central role in defining the experiences of those diagnosed with Alzheimers disease, stigma in dementia has been understudied.
In a paper published in Current Psychiatry titled Stigma in Dementia: Its Time to Talk about It co-authored by Penn Memory Center Scholar, Shana Stites, PsyD, MA, MS, the authors highlight the impact of stigma on those with dementia, how it has been studied and addressed in the past, and steps to mitigate stigma in the future. The paper follows a collaboration of the authors for a symposium on stigma that they presented at the 2018 Gerontological Society of America Annual Scientific Meeting in Boston.
Penn Memory Center Scholar Shana Stites, PsyD, MA, MS
In her work at the Penn Memory Center, Dr. Stites studies how stigma affects persons living with dementia in order to develop ways to stop and prevent its negative consequences.
We know persons living with dementia encounter stigma. Studies are needed to understand how best to change it, said Dr. Stites
They also cited a study where one participant said, I think there is people I know who dont ask me to go places or do things cause I have a dementiaI think lots of people dont know what dementia is and I think it scares them cause they think of it as crazy. It hurts
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We Need An Experiential Model For Dementia Rather Than A Biomedical One
What if, instead of a biomedical model, we applied an experiential model? What if we thought of people as experiencing the condition of dementia rather than developing it? If we looked at them from the perspective of what they are experiencingthe loss of certain skills theyve been accustomed to usingit would follow that we as humans have predictable emotional reactions when we suddenly find ourselves unable to do something, or confused by something, and that our subsequent behaviors reflect how we feel.
Further, using an experiential model is not new. It is the model we use to raise children, who are also experiencing changes in their emotional and cognitive abilities.
Whether we consider ourselves to be the product of a lengthy evolutionary process or of a divine and compassionate Hand, we have been endowed with various cognitive skills. If we look at these skills from the perspective of how they help us function , they fall neatly into three contrasting pairs.
Unfortunately, we look at these skills and assign values to them, saying that some are better than others.
Whatever or Whomever oversaw the process of our arrival at our current existence, we stand here now with a bicameral brain and six very distinct and discretely useful cognitive skill sets.
Ways Dementia Stigma Must Be Challenged
Some people affected by dementia have felt discriminated against. Here are five peoples first-hand experiences with the stigma of dementia.
Sharing the voices of people affected by dementia is an important way of raising awareness.
Peoples experiences of dementia can vary. But often, the stories we hear include experiences of discrimination. This can be a result of dementia stigma, where one person has a degrading attitude towards another person.
The following are just some of the experiences shared with us. They show how the stigma of dementia can affect so many, and spread further than just the person living with dementia.
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End The Shame And Blame
Having Alzheimers is nothing to be ashamed of. You did nothing to deserve it so you dont have to hide. But still, people, especially those newly diagnosed, feel they have to whisper about their disease and keep the diagnosis close to the vest in shame. Many times, a diagnosis is not publicly known, or even known among family members, until something alarming happens, such as getting lost, getting in a car accident or making a big financial mistake.
A recent study found that one in four people hide their Alzheimers diagnosis from others. In contrast, think about how differently you would handle getting a cancer diagnosis. You would be much more likely to share this news in order to start getting support and fighting the good fight. Not so with Alzheimers. Shame and blame are the two main reasons why so many people hide their diagnosis.
Unlike a condition that only affects the physical body, dementia is associated with words like crazy,insane, and senility. As a result, words like humiliation, distress, and dishonor are used when reflecting on how the person with dementia feels. In addition to shame, many people feel guilt for developing the disease, as though it is their fault that they are becoming a burden on loved ones. They may say such things as I should have taken better care of myself or If only I had exercised more. Yes, lifestyle habits can affect the risk of Alzheimers, but some people get Alzheimers despite being healthy and fit.
Suffering In Dementia Comes From How We Are Treated
When I began spending time with people who were experiencing dementia over a decade ago, I quickly realized that although they were losing cognitive skills, they were not losing all their cognitive skills, and that those they kept were the most essential for enjoying life.
I saw that the suffering my new friends were experiencingthe suffering we equate with dementiacame from how they were treated, not from their losses. It is the biomedical model of disease/symptom/treatment that we continue to apply to dementia that causes pain and stress and loss of dignity.
Surely, we understand that losing our ability to understand why or howto grapple with facts or evaluate or categorizedoes not negate our ability to enjoy beauty and companionship, let alone our humanity. Surely, we understand that when someone loses the ability to recall and recount past events, they do not become immune to experiencing joy or pain, both physical and emotional.
Yet so very often I have been told: It doesnt matters/he wont remember anyway.
Descriptive Statistics Of The Main Variables
Means and standard deviations for the studys main variables are presented in . As shown, the mean levels of burden and of almost all the dimensions in the family stigma construct were moderate, with only a few having a mean over 3.5 on a 5-point scale. Among the indicators of different aspects of stigma, lay public stigma had a higher mean value than caregiver stigma, suggesting that participants perceived greater stigmatic beliefs directed from the public to the person with AD than toward themselves as caregivers. Positive emotions, such as pity, were high in both the caregiver and the lay public dimensions. In the structural dimension of stigma, a relatively high mean was reported for the knowledge of health care professionals .
Ethics Approval And Consent To Participate
Ethical clearance was obtained from Fudan University School of Public Health. The subjects enrolled gave their written informed consent before entering the study, none of patient identifiable features was contained in the study. The written informed consent was read by the reviewer if the participant was illiteracy, then illiterate individual could choose to press his/her fingerprint or give his/her relative the permission to sign. This study complied with the Declaration of Helsinki. Neither the case records nor the data were used for any other purpose. All data accessed complied with relevant data protection and privacy regulations.
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Perceived Stigma Towards Alzheimer’s Disease And Related Dementia Among Chinese Older Adults: Do Social Networks Matter
Published online by Cambridge University Press: 25 September 2020
- School of Sociology, Huazhong University of Science and Technology, Wuhan, China
- Fei Sun
- School of Social Work, Michigan State University, East Lansing, Michigan, USA
- Lucas Prieto
- School of Social Work, Michigan State University, East Lansing, Michigan, USA
- Vijeth Iyengar
- Affiliation:US Administration on Aging/Administration for Community Living, US Department of Health and Human Services, Washington, DC, USA
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Be open and honest. Tell family and friends about a diagnosis of Alzheimers. Encourage people to become educated about the disease. This will help reduce possible stigma that your loved one may experience with others.
Action Step: Look online for reliable information about Alzheimers disease and other related dementias. The Alzheimers Association is a great place to start. Refer family members to the site so that they can become educated about the disease.
Join an Alzheimers support group. Having the support and ideas shared by others can be invaluable. Many of these caregiver support groups have concurrent groups for the family member that has dementia. This helps them feel included and engaged.
Action Step: Again, the Alzheimers Association will have a list of support groups in your area. If this isnt possible, consider hiring a caregiver to accompany your family member to the senior center. A good caregiver can find appropriate activities for your loved one to participate in. They can also smooth over any awkward moments with other participants. If none of these is possible, caregiver blogs abound on the web where families, caregivers, and those with dementia share their stories and strategies.
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Family Stigma And Caregiver Burden
The most notable finding of the present study is the impact of family stigma on caregiver burden. Similar to the area of mental illness , our study showed for the first time in the area of AD that family stigma has an important effect on caregiver burden and that the caregiver dimension of family stigma had the greatest impact. These findings suggest that adult children’s perceptions of being stigmatized by their association with parents with AD considerably increase their negative caregiving experiences above and beyond the effects of more traditionally researched factors, such as the behavioral problems associated with AD and the number of years involved in caregiving.
Previous research found that shame is one of the main emotional reactions reported both by caregivers of persons with mental illness and by caregivers of persons with AD . Moreover, shame was found to be closely related to burden in mental illness . The present findings show a similar picture of shame as a predictor of burden for caregivers of individuals with AD.
Family Stigma As Experienced By Caregivers Of Parents With Ad
Our results showed that adult children caring for parents with AD reported lower levels of stigma than those reported in studies dealing with mental illness. There are several possible explanations for the difference in findings. First, contrary to our quantitative analyses, the studies of caregivers of persons with mental illness used qualitative methods that may have allowed participants to express feelings of discrimination more freely. Indeed, the qualitative studies of family stigma associated with AD also reported stronger feelings of stigma among caregivers than our quantitative analysis revealed. Second, the majority of the studies in the mental illness area were not conducted exclusively with adult children but included mixed samples of spouses, children, and other types of caregivers .
An alternative explanation for the difference might stem from the divergent characteristics of the diseases. Mental illness in general, and schizophrenia in particular, is associated with high perceptions of dangerousness, which may lead to increased stigma . In contrast, AD is associated with low perceptions of dangerousness .
Previous studies conducted among the lay public have found that persons with AD elicit more positive than negative emotions . The results of the current study showed that pity was relatively high in both the caregiver and the lay public dimensions, suggesting that positive emotions are also more prevalent than negative ones among caregivers.
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The Common Causes Of Stigma Aroundalzheimers
People have negative feelings about people with Alzheimers due to wrongbeliefs about Alzheimers and those thoughts lead to stigma. People often believethe following untruths about Dementia and Alzheimers:
- Cant depend on themselves, they are helpless and entirely dependent on others to do everything for them.
- Their behavior is deliberate to get attention or to be annoying.
- They arent aware of the surrounding environment and are completely isolated from reality.
- There is a change in their personality, they become more aggressive and have abnormal behavior.
- Alzheimers patients are a hopeless case with no light or bright sides to their illness.
- Alzheimers patients dont understand anything you say to them.
But, by education and experience which has taught me about Alzheimers, Ihave found that all these statements are wrong to some degree.
People with Alzheimers are fundamentally the same person they havealways been but with an illness that erodes or disguises their true selves.
Oftentimes, changes to the way you interact with an Alzheimers patient is all that is needed to break through the cloud of the disease and see the person underneath.