Advocacy, Care Partnering, Toward better care

dementia rights advocate spells out human rights in open letter to comedian tim conway’s family

Octogenarian and much-beloved American comedic actor Tim Conway (reported to be living with dementia), is the center of a family dispute regarding his care. This kind of situation is far from uncommon in families where one or more members live with dementia. Unfortunately, I know from personal experience how such disagreements can tear a family apart.

Dementia rights advocate Mary Radnofsky, who lives with dementia herself, captures the essence of what is important when helping  people with dementia make decisions about their lives and their care.

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Advocacy, Real life, Toward better care

feed them ffs!

Maryanne, one of my long-time US followers, wouldn’t use swear words like the one I alluded to in the headline — she’s a quiet, religious, God-fearing woman. So I’m swearing on her behalf because her story warrants expletives.

Maryanne (not her real name), is the primary care partner for her husband — let’s call him “John” — who lives with dementia, and who was relocated to a dementia prison (aka nursing home) several years ago.

In 2017, Maryanne was banned from seeing John for more than six months because she “complained” about the neglect and abuse she witnessed on a daily basis in the facility. She fought hard to regain access, and is now able to visit John again. At least for the moment.

But Maryanne’s visits are a mixed blessing. She’s thankful she’s able to see John, and to care for his needs when she’s there. However, she is also forced to silently witness the ongoing neglect and abuse he and his fellow residents suffer. She doesn’t dare say anything for fear of once again being denied access to John, whose ill health worsens each day.

Sometimes Maryanne’s frustration, despair and anger spill out onto her Facebook page. Here is an April 2018 update she asked me to share:

“It’s wrong to allow someone in a nursing home to go hungry because they are too drugged and tired to eat or unable to eat on their own or need prompts to help in eating and you don’t provide those prompts. It’s wrong and it’s criminal.

When a lady sits with a filet of fish on her chest all through her lunch and no one helps her that is a travesty. When a man who eats with his hands is given peas and carrots or kernel corn to attempt to eat but can’t, that is neglect and abuse. It’s wrong. I’ve seen it more than once. Stop it and do what is right instead of continuing to do what is wrong.

You may get away with it now, but in the end you will not. You are continuing a horrible practice on human beings that are created in God’s image and likeness. You do not have the right to play God and end their life by starvation or dehydration. Stop it now and feed your residents. Help them eat. Assist them. Let them take the time they need. Give them the care and nourishment they deserve and that is their right. Feed them for God’s sake!”

It’s hard to imagine that older adults living with dementia in long-term “care” facilities are being starved in the United States right now as I write this. But that’s John’s reality. It’s the reality of John’s fellow residents too. It’s also hard to believe that care workers would toss older adults around like rag dolls while “caring” for them. But people have been caught on video doing it.

Elder neglect and abuse happen more often than you might think. And that’s the godawful truth.


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Advocacy, Life & Living, Resources

8 principles of high-quality care and support that people who live with dementia and people who don’t live with dementia all deserve

Who knows better what they need to live with a disease, a condition, a problem, a challenge, a difference than those who live with it?

Nobody, that’s who.

The World Dementia Council (WDC) is an international charity. It consists of 24 senior experts and leaders drawn from research, academia, industry and NGOs in high-, low-, and middle-income countries, and most important, it includes two leaders with a personal dementia diagnosis.

In May 2017, the WDC published a Global Care Statement Calling For More Care and Support For People Living With Dementia. This is what it said in part:

“All persons affected by dementia – those living with the diseases that cause it, their care partners, and their family and friends – have a right to receive the highest quality care and support possible to meet their needs. They have the human right to be treated with dignity and respect. And they are entitled to full and effective participation and inclusion in society. These rights transcend national boundaries and cultures.”

The statement included eight principles of high-quality care and support, the short forms of which are listed below, and which, in my view, apply to everyone, not just people who live with dementia. I’ve put brackets around the bits that could be taken out to make this principles universally applicable:

1) Individuals receive a timely and accurate diagnosis; and are told of that diagnosis
2) People [living with dementia] are entitled to respect and dignity
3) Communities are inclusive of people [living with dementia]
4) Care is person- and relationship-centered
5) The provision of person-centered care is based on continuous assessment and individualized care planning
6) People [living with dementia and their care partners]  are involved as active participants in [their own] care planning
7) Medical and care professionals have adequate knowledge [of all aspects of dementia]
8) Care coordination and collaboration occurs between all care providers

Equally important is the WDC statement below that calls for collaboration between all those involved in care whether they be “professionals,” family care partners, or other care providers. I particularly like the fact that monitoring and evaluating care and support is specifically mentioned as I feel this is the only way to stop the neglect and abuse of people who live with dementia in their own homes as well as in long-term care facilities.

See the WDC care statement and a more detailed explanation of each of the eight principles here.

The principles also express the need for medical and care professionals to be knowledgeable of all aspects of dementia and to work across disciplines to ensure a holistic approach to disease management; and for care coordination and collaboration to occur between all care providers, including in monitoring and evaluating the care and support provided. Yes. All of that makes sense to me.

Bravo WDC for identifying what people who live with dementia deserve, and what the rest of us who don’t yet live with dementia deserve as well!

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