Don’t write us off: People with dementia press for more rights — and respect

Ten months ago, Peter Mittler stood before a global audience of Alzheimer’s disease researchers and advocates and decried the indignities that people with dementia undergo.

He knows the subject intimately: Mittler, an 86-year-old British psychologist, was diagnosed with mild Alzheimer’s in 2006.

“Everybody thinks that we are just a medical problem,” Mittler told his audience.

“People underestimate us.”

“They write us off.”

“They don’t think we’re capable of making decisions.”

Mittler is determined to change that. He’s a prominent voice in Dementia Alliance International, a global organization run by and for people with dementia. Its leaders travel the world to promote its signature issue: human rights for people with cognitive impairments.

At the most basic level, their demands boil down to this: Don’t write us off. Include us in conversations about our future, rather than making decisions for us. Help us participate in community activities, rather than locking us in institutions. Let us weigh in on public policy. Give us adequate care.

Respect our essential humanity.

These activists want dementia to be seen as a form of neurodiversity: a different, and widely misunderstood, way of experiencing and interacting with the world.

They have an uphill battle.  In many countries, including America, Alzheimer’s disease is feared more than any other condition, in part because there are no effective treatments and the final stage of this illness is devastating.

“The stigma surrounding dementia is overwhelming,” Mary Radnofsky said in a phone interview

from her home in Alexandria, Va.

Radnofsky, 58, spent years dealing with hard-to-explain symptoms — fainting spells, difficulties with numbers, problems understanding and relating to people — before she had a test in 2013 that identified a form of leukodystrophy, a rare genetic condition that leads to brain damage.

When she shared her diagnosis, she was shocked by the response. Friends stopped calling. Family members distanced themselves. An ex-fiance showered her with pity, then broke off contact. Doctors treated her with condescension.

Yet Radnofsky still had a need for intimacy and a desire to be accepted and to live as well as possible with her limitations.

“Just because we have a diagnosis of dementia doesn’t mean we’re altogether incapable and lost,” she said. “We have much more to contribute than anyone gives us credit for.”

Radnofsky credits DAI with helping her overcome a sense of despair and abandonment. Now, she’s planning to write a book about human rights and dementia – a subject that brought her to a UN conference on disability rights last June, as a DAI representative.

Pressing for respect under a global treaty

Pressing the 168 countries that have ratified the United Nations’s Convention on the Rights of Persons with Disabilities to treat people with cognitive impairments like people with other disabilities is a key goal for DAI.

(Although the US signed the convention in 2009, expressing general support for its principles, the Senate has refused to ratify the treaty.)

The treaty calls for people with disabilities to be respected, free to make their own choices, included in society, able to access their surroundings, and protected from discrimination. It applies to people who have “long-term physical, mental, intellectual, or sensory impairments,” according to Article 1 of the convention. That includes individuals with cognitive impairments, legal experts agree.

Yet people with dementia haven’t had a seat at the table, either in the UN or with national governments implementing plans to advance rights guaranteed under the treaty.

DAI is focused on changing that. After extensive discussions, Alzheimer’s Disease International – which represents 85 Alzheimer’s societies  across the world– adopted a human rights-based platform last April. In August, Mittler testified before the UN committee that oversees the disability rights convention. “We were very well-received,” he said.

Now, attention is turning to the World Health Organization, which is expected to endorse a global action plan on dementia in May.

In some countries, women with dementia are considered “witches” and subject to violence, a WHO brief noted. In others, including the United States, people with this condition are drugged, beaten, physically restrained, neglected, or subject to financial and emotional abuse.

The underlying theme: a failure to recognize as fully human people whose brains are impaired or to understand their needs, from their perspective.

‘Go home and get your affairs in order’

No one has done more to shed light on this topic in the past few years than Kate Swaffer, a 58-year-old Australian who now serves as DAI’s chief executive and chair of its board of directors.

After she began seeing letters and numbers back-to-front and having difficulties with written language almost a decade ago, a doctor diagnosed a form of frontotemporal dementia.

“Stop working, go home, and get your affairs in order, and become familiar with care for the aged,” Swaffer remembers being told.

She calls this advice, which assumes that a person’s life is essentially over, “prescribed disengagement.” Swaffer cried for weeks, then struggled with hopelessness.

Like most people with dementia, Swaffer had a patchwork-like assortment of impairments: She was also experiencing short-term memory loss and difficulty processing information. But these symptoms fluctuated, and with effort she was able to find ways to cope.

This is true of millions of people in her circumstances.

Although the final stages of dementia are, indeed, horrific, wreaking extensive havoc on patients’ bodies and minds, many people spend years living with and adapting to the condition before succumbing to this kind of deterioration.

They might be able to carry on a conversation but not remember what they said afterward. They may be able to focus intensely on one task, but not do several things at once. They may be overwhelmed by loud noises or stress, but do fine in a quieter environment. Or they may take more time to get themselves going in the morning — initiating activity is a common problem — but function well in the middle of the day.

These individuals with mild to moderate cognitive impairments are largely invisible in the public sphere. Instead, the rhetoric surrounding dementia focuses on people who have become “shells of themselves” or “robbed of their identities.”

“We are people, not patients” and “we object to constantly being referred to as ‘sufferers,’” Mittler said in a speech in Manchester, England, last November. “We’re not demographic time-bombs or tsunamis” — language that dehumanizes people with dementia and contributes to discrimination, he said.

“There are tens of millions of people around the world with dementia who need our support and compassion,” said Ian Kremer, executive director of Leaders Engaged on Alzheimer’s Disease, a public policy coalition. “Not enough is being done to promote [their] quality of life. We can do a lot better.”

Learning to live with dementia

Swaffer’s grief began to diminish when she came across the work of Richard Taylor. A psychologist diagnosed with early-stage Alzheimer’s, he wrote one of the first books about that experience, “Alzheimer’s From the Inside Out.”

“It felt like I was reading my story,” she said.

Swaffer started writing, too, and today is the author of a blog and two books, including “What the Hell Happened to My Brain: Living Beyond Dementia,” written with coauthors.

A crossroads came when she told a professor about her diagnosis and admitted she was thinking of withdrawing from a long-delayed effort to get a bachelor’s degree.

“She said, you know, Kate, if you had a son and he had dyslexia, would you tell him he couldn’t go to university? And when I said, ‘Of course not,’ she referred me to the university’s disability support people,” Swaffer remembered.

That team at arranged for someone to walk Swaffer to class if she was feeling lost. Some professors agreed to let their lectures be recorded; in other classes, someone took notes on Swaffer’s behalf. With these supports, she completed her degree and eventually went on to graduate studies.

Along the way, Swaffer realized that dementia could be seen in a disability rights framework, which emphasizes helping people adapt to impairments instead of telling them to go home and prepare to deteriorate, then die.

Swaffer tells of a close friend who had a major stroke and was given intensive rehabilitation — physical therapy, occupational therapy, and cognitive therapy. Within a year, her friend, a nurse, was almost back to normal and back in the operating room.

“Why the hell didn’t they do that for me when I was diagnosed?” Swaffer asks.

Frustrated, Swaffer created her own rehabilitation regimen. She lost weight, changed her diet, upped her exercise to five times a week, and challenged her brain by continuing her studies at the university. She and seven fellow activists cofounded DAI early in 2014.

She is “battling like hell to keep her dignity and self-respect intact,” said Peter Watt, her husband of 19 years.

Creating ‘cognitive ramps’ 

Swaffer argues that people with dementia should be offered a “rehabilitation pathway” that helps them strengthen remaining abilities and compensate for those that are lost — including access to therapists and social workers who can connect them with community resources.

Mittler has called for “cognitive ramps” that can help people with dementia live to the best of their abilities, similar to the physical ramps that help people in wheelchairs get in and out of buildings.

At home, this may mean “cheat sheets” that help people with dementia perform ordinary tasks, like running the dishwasher.

In public, this can involve creating dementia-friendly communities with support groups and training for police officers, cashiers, librarians, and others who are likely to interact with people with dementia.

“In the same way that we now take for granted cut curbs and electric sliding doors, there ought to be similar things that make use of public accommodations more readily accessible,” Kremer said.

That’s easier said than done. Supports and services are expensive, and the numbers of people who will need help is enormous: an estimated 75 million worldwide by 2030.

For its part, DAI works on a shoestring budget, reaching a tiny fraction of people with dementia. Its leaders know they won’t be able to keep up current activities as their illnesses progress, and succession plans aren’t clear.

For now, they’re encouraging people with Alzheimer’s and related conditions to work on building alliances with local organizations that advocate for people with other disabilities. “We will be stronger together than on our own,” Mittler said.

Meanwhile, DAI leaders take heart from the success of the broader disability rights movement over the past 40 years. And they use that movement’s language as they continue to speak out.

“See us as whole people, not our diseases or disabilities,” Mittler urges.

And: “Nothing about us, without us.”