It's not him, it's the disease,” we say as the demented man yells in anger. It's not her, it's an illness," we say if a demented woman peppers her conversation with vulgarities. The first is what he sees as the pinnacle of respect for the dead – the creation of the Tomb of the Unknown Soldier.
Elitist' to 'mildly impaired', 'severely impaired', 'vulnerable' and 'discouraged' older persons. All the people with Alzheimer's that we meet in the film are deep in the disease process. I think if more people knew that, they would join the fight.” Paid ad copy with the slogan also highlights the early form of Alzheimer’s disease.
In the opening scene of the first episode, Edwin Poole (another named partner) arrives at a meeting without his pants on. In "Still Crazy After All These Years", the second episode of the first season, Brad Chase openly tells Denny what is going on around him. That's why we immediately arranged a meeting with her.” The group made all the difference in the world.
Around that core is one of the fastest growing nonprofit organizations in the country. Students met with people with early-onset Alzheimer's and people in the early stages of the disease. Someone said, "You should be grateful every day." The song has become a classic in her repertoire.
And the next thing I knew, there she was, no purse, dancing in the middle of the group. The caption to one of the paintings, which I prefer to Picasso (and I like Picasso), reads: “The paintings reveal the gradual descent of Utermohlen into the ever-darkening pit of dementia. And how does anyone else really get to know them?” The peculiarity of the questions helped the residents of Duplex Nursing Home (and all the subsequent people Greenberger spoke with) to violate the traditional rules of decorum.
Autobiographies by people with dementia open a very different window into the experience of the disease - the struggle to tell one's story in the first person and track it over time.
Insist on Complex Stories of Dementia
But taking control of attitudes and care systems now can help us shape the experience of dementia for them now and in the future. What specifically do we need to remember and do to improve the cultural experience of living with amnesia. But here is a summary of the kind of cultural work that we – all of us, people with dementia, their families, their friends, their professional care partners, even those not directly related to someone with dementia – can do right now to make people's lives better with dementia.
Depression and stress due to anxiety and the stigma of memory loss can worsen both symptoms and the care partnership experience. Friends and family, who themselves fear memory loss, may avoid the person experiencing it, cutting that person off from the social memory that condensed their life and gave it meaning in the first place. Dementia can be frightening and disorienting, both for people who experience it and for loved ones who witness someone experiencing it.
Negotiating systems of care can be very frustrating, and home care can be isolating and exhausting. The experience of dementia involves grieving the changes in the person with memory loss and grieving for oneself, for one's identity affected by the loss of social memory—a daughter who is no longer recognized as a daughter, a spouse who is not recognized. as a spouse. But the story of dementia is also that the individual's "I" persists to the end, that growth and learning are possible, that social memory remains when the individual's memory falters, and that relationships with the person with dementia are mutual.
Embrace the Gray
Advance the Dementia Advocacy Movement
The Meet Me at MoMA program extends MoMA's accessibility programming, which opens their collection to people with visual, hearing, and physical disabilities, to people with cognitive disabilities. Support for people with dementia should not only come from adult day programs or assisted living or nursing home recreation activities. Cultural institutions of every size and shape must address cognitive impairment in their accessibility programs and, as John Zeisel says, be part of the treatment plan for people with dementia.
Can you imagine if a woman who lives at home with her husband feels comfortable taking him to the local art museum. Imagine if they were greeted by a member of staff trained in how to interact with people with dementia rather than feeling shamed for revealing their symptoms. The dementia advocacy movement needs to take back the language of dementia. Rather than running away from the deepest stereotypes, the disability movement has successfully turned them on their heads by embracing them.
Could the worst words we can imagine to describe the experience of dementia be similarly appropriated. Can we reach a time when "demented" is worn on a T-shirt and reads not as an insult to the person with dementia who wears it, but as an insult to the culture that shames him. The dementia advocacy movement has some catching up to do, but it can also teach the disability rights movement about the complexities of dependency. The disability rights movement's focus on independence is clearly not at the heart of dementia advocacy.
People with dementia enter into complex caring relationships with family, friends and paid care partners. The dementia advocacy movement can challenge the disability rights movement to more fully consider the complexity and value of interdependence, and show the movement how to insist on person-centered care in homes seniors rather than simply allowing them to empty and close. I'm willing to bet that with the increasing number of children diagnosed early and the growing number of activists with physical disabilities who are now aging into cognitive disabilities, we will see a confluence of disability rights and dementia advocacy movements. .
Think Creatively and Fight for Better Options
Think and Act in Coalition
Dementia advocates need to reach out to groups who share the same challenges and can benefit from their victories. Farm subsidies provide incentives for high-fat cattle fed corn and high-fructose corn syrup, which contributes to obesity, heart disease and diabetes. We need to think creatively about who might have a shared mission to improve the quality of life among people with cognitive disabilities, build relationships and learn how to make changes.
Value Listening, Silence, and the Present Moment
Understand That Memory Is More Than Individual Property
Healing Is Bigger Than Memory
Activists, artists or therapists gather and share the stories and voices of survivors of all kinds in an effort to connect the past with the present and, it is hoped, envision and open to a transformed future. Perhaps simply shifting the language of healing so that it relies less on memory and more on something like shared visions will help reduce the pressure placed on memory to be the locus of any hope for healing.
Assert the Value of Forgetting
Insist That It Is Normal for Young People to Care about Aging
All young people who are interested in working with older adults should stop worrying about whether people will think they are strange. I think it's very strange to actively avoid thinking about getting older or being with older people, and thus deliberately detaching yourself from some of life's greatest mysteries.
Open Avenues for Meaning-Making
The arts provide a way to open these avenues of meaning-making between people who cannot communicate through traditional, rational language. As Liz Lerman so eloquently said, there is a busy highway between the extremes of art. At one end are the elite arts, such as ballet and opera, which we watch with amazement.
On the other hand are therapists who, in some situations, are really the only people qualified to help a patient. But on the busy highway between these two extremes, there are Katie Williams and Steppers Good of Luther Manor. Unfortunately, I can't cite statistics about the power of the arts that policymakers will believe enough to put money behind arts training and programs in any dementia care setting.
There are no studies of large-scale, double-blind, controlled programs that open up understanding between care partners and people with dementia. Do we think the impact on people with cognitive disabilities will be so radically different? Small-scale studies show that visual arts programs improve mood and quality of life for people with dementia.
And this narrative increases the quality and quantity of interactions between staff and residents with dementia in nursing homes. We need research to convince policymakers that training care partners to foster meaningful moments with people with dementia can work better than pills and without the side effects. Making sense can also work to reduce stigma and fear, something a pill can never do.
Don’t Be Afraid of Reducing Fear
When It Gets Dark: A Bright Reflection on Life with Alzheimer's. New York: Free Press,. Newsweek reports on Alzheimer's, featuring "The Agony of Alzheimer's Disease" on its cover and the publication of "A Slow Death of the Mind" by Matt Clark (December). Losing Self: A Family Resource for Alzheimer's Care and Related Disorders, by Donna Cohen and Carl Eisdorfer, is published.
Alzheimer's, a Love Story: One Year in My Husband's Journey, by Ann Davidson, is published. Speaking Our Minds: Personal Expressions from Individuals with Alzheimer's, edited by Lisa Snyder, is published. Decoding Darkness: The Search for the Genetic Causes of Alzheimer's Disease, by Rudolph Tanzi and Ann Parson, is published.
