dignity – My Alzheimer's Story

Advocacy, Antipsychotic drugs, Music, Videos

she couldn’t sing because she was sedated

May 26, 2020 My Alzheimer's Story

My mother, who lived with dementia, was chemically and physically restrained every day for the forty-five months she lived in a dementia jail (aka a long-term care facility or nursing home).

These restraints could have been avoided if the medical personnel in charge of her care had addressed the root causes of the behaviours they found challenging in her. All they needed to do was to take a closer look at what was going on around Mom. If I could do it, surely they should have been able to.

When Mom was sedated, she was unable to do things she loved to do such as walking and singing. Here she is not singing (because she had been sedated an hour or so before), at some of the weekly sing-alongs conducted by volunteers at the place she resided:

Besides cruelly sedating her with antipsychotic drugs, no one who was involved with my mother’s care listened to my request to provide her with music therapy. So I hired a music therapist myself and the three of us enjoyed many happy afternoons together after the worst sedative effects of the chemical restraints had worn off. Here’s an example of one of those wonderful sessions:

a magical musical alzheimer gift

And this one was just four days before Mom died on August 17, 2016:

one last sing-along: august 13, 2016

I miss you Mom.

50 more pics that prove my mom was neglected and abused in long-term care

four years later is too late for my mom. but it’s not for others.

alzheimer disease didn’t do this. drugs and dementia jail did

10 reasons why neglect and abuse of elders with dementia may be the norm rather than the exception in long-term care facilities

25 practices long-term care workers know are elder neglect and abuse; it’s time to put a stop to it

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Advocacy, Care Partnering, Toward better care

50 more pics that prove my mom was neglected and abused in long-term care

May 24, 2020May 27, 2020 My Alzheimer's Story

If you don’t have proof, you won’t be believed. Sometimes, even if you DO have proof, you are not believed.

I learned that when I went to court to try to get control of my mother’s care in early 2014. I had lots of proof, but I still lost. I was devastated. But the loss didn’t stop me from documenting the neglect and abuse my mother continued to suffer until her death in August 2016.

The neglect included not having her incontinence pads changed as frequently as they should have been, having the pads put on backwards, not having wounds properly dressed and not having the level of one-on-one care she required.

The abuse consisted primarily of being chemically restrained with antipsychotic drugs (which caused her to stumble, bump into things, fall and sustain a continual stream of injuries), and being physically restrained with recliners, wheelchairs, and various types of alarms.

These fifty photographs (all taken in 2014), show what this neglect and abuse looked like.

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If you have a family member in long-term care:

learn what constitutes neglect and abuse
visit often at different times of the day
watch how staff treat other residents
document what you see and hear
advocate for proper care

25 pics that prove my mom was neglected and abused in long-term care

four years later is too late for my mom. but it’s not for others.

alzheimer disease didn’t do this. drugs and dementia jail did

10 reasons why neglect and abuse of elders with dementia may be the norm rather than the exception in long-term care facilities

25 practices long-term care workers know are elder neglect and abuse; it’s time to put a stop to it

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

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Take my short survey on behaviour here.

Advocacy, Care Partnering, Toward better care

who is responsible when people living with dementia are robbed of their dignity in long-term care?

May 14, 2020May 14, 2020 My Alzheimer's Story

Of the roughly seven hundred entries on seventy-five pages of nurses notes I was sent leading up to the court case I had initiated to try to get legal control of my mother’s care, the only one that made me cry was logged at 9 a.m. on June 26, 2013:

The second-floor “dining room” was small, more like a kitchenette really. It had a table in the middle at which six residents could be squeezed at mealtimes, a recliner (of course!) in one corner, and a rocking chair in the other. It had sliding glass doors that opened onto a little balcony where no one was allowed to go, and, at the opposite end, a sideboard with a sink and cupboards above.

I imagined Mom in there, needing to use the bathroom, but not knowing where one was. Maybe she had cramps in her tummy, as she often did in the morning. She suffered with diverticulitis. It flared up when she ate nuts or seeds or corn.

“Where’s the bathroom?” Mom would have asked other residents sitting at the table. “I need to go to the bathroom.”

The others, if there were any there, wouldn’t have answered because they wouldn’t have known. They would have forgotten, just as she had. If there were no other residents, Mom might have asked one of the care workers. If there had been any there, they might have noticed the telltale signs that Mom needed to got to the toilet. The signs were obvious, as I had explained to the Director of Nursing (DoN) four months earlier when she had asked me in a phone call whether Mom was in the habit of squatting and peeing on the floor. “No,” I said, surprised by her question. I wrote her an email the following day (February 5, 2013); it read in part:

“After I hung up the phone with you yesterday, I knew immediately why mom did this “squatting” behaviour in the living room at [the Dementia Jail]…she was desperate to “go to the peeps,” she didn’t know where to find a toilet, there was no caregiver…to help her, so she decided the best solution was to go on the spot rather than ‘in her pants.’

Even in her own room, she needs to be guided to where the bathroom is. For example, she may be sitting on her bed, facing the bathroom door, she will say: ‘ need to go to the peeps’, stand up, turn right, and head towards the closet.

It’s easy to see the signs when [Mom] needs to go to “the peeps;” she starts to look distracted, she fiddles with the front of her pants, she may stand up, she may put her hand on her lower belly or between her legs, just like little kids do.”

The DoN replied saying she would share the information with the staff. It seemed strange to me that she hadn’t figured out for herself what lay behind the “squatting,” given that she was meant to be an expert in caring for people living with Alzheimer disease. Mom’s behaviour was basically Dementia Care 101, or at least it seemed so to me.

Had the DoN conveyed the information to the staff (who also should have known without having to be told), and had there been one of them in the dining room that morning, they might have wondered what my mother was doing when she went over to sideboard and took a piece of paper towel from the roll that was sitting there.

They may have kept watching when she laid the paper towel on the floor in whatever space she could find. But when she stepped in front of the paper on the floor, unbuttoned and unzipped her trousers and started to pull them down, surely they would have intervened and taken her to the toilet. Or one would hope they would have intervened…

But no one took my mom to the toilet, so it seems there weren’t any care staff there to help her preserve her dignity. Where were they? Around the corner at the nursing station, which was no more than twenty feet away, having a chin wag as I had observed them do on many occasions? Or maybe they were busy with other residents? Who knows?

What can be understood from the notes, which were written from the perspective of the charge nurse and not my mother of course, is that Mom had a bowel movement on the dining room floor and then tried to clean herself. How must she have felt throughout this episode? Confused? Scared? Embarrassed? Ashamed? Agitated? Upset? Surely she was robbed of her dignity, and that’s what made me cry when I read the entry. When I flipped the page to find the same thing happened the following week, I saw red.

I remembered the incident of the dirty pull-up. The week after, Mom was without a pull-up under her trousers, which were wet, two nights running. The next Saturday morning, I found her walking naked in the hallway; her bed was soaked and the room reeked of urine. Then there were the times her incontinence pad was so full it had leaked, and created crescent-shaped wet spots on her pants.

None of these had been mentioned in the eight months’ worth of nurses’ notes I was sent in advance of the court hearing. But fourteen other incontinence incidents had been recorded. They all implied the fault lay with my mother, when in reality it was the DoN’s responsibility to ensure her staff met my mother’s basic hygiene needs. Had the Director of Nursing done her job, my mother wouldn’t have suffered the indignities she did.

Likewise, my mother wouldn’t have been chemically restrained with antipsychotic drugs, physically restrained using recliners and other means, hospitalized with thrombosis in her leg, forced into incontinence, forced into a wheelchair, denied the right of seeing me, her daughter, during the last eighteen months of her life, and left in the bathroom alone to fall, break her arm and as a result of the trauma, die three weeks later.

Robbing someone of her or his dignity is tragic. Neglect and abuse are criminal. Those who are responsible should be held accountable.

Note: To add insult to injury, there were no “public toilets” on the second floor where Mom did not have a room of her own (her room was on the third floor). So when she was “toiletted,” she was taken into one of the second floor residents’ rooms too use their bathroom. But if she “wandered” into one of the second floor residents’ rooms on her own, she was admonished for doing so, dragged out into the hallway and made to sit in a chair in the corner by the elevator. Naturally she protested by striking out, and was then written up in the nurses’ notes as being aggressive and uncooperative.

which way to the bathroom?

hail mary i need to pee

5 ways we rob people with dementia of their dignity

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Advocacy, Antipsychotic drugs, Toward better care

like one flew over the cuckoo’s nest

June 7, 2019May 10, 2020 My Alzheimer's Story

I should have known better than to invite my photographer friend Edith to do a day-in-the-life photoshoot of Mom and I on a Friday.

I had intended for Edith to capture in images the wonderful time Mom had when I brought her to my place for lunch or dinner. I wanted to show how well she was able to function, how she helped me make lunch, how close we were, how capable she was, and how much we enjoyed spending time together.

But Friday was bath day. That meant Mom was more likely to be even more drugged than usual. Why? Because she “resisted” being undressed and put in the noisy whirlpool bath with a sling-like lift that must have frightened her. Sometimes she resisted “violently,” just as 98 per cent of “normal” people would under similar circumstances (per my Short Survey on Behaviour).
Adding fuel to the fire was Betsy,* the nurse who gave the baths; she was as mean as a junkyard dog. I don’t recall ever seeing her smile during my four years of daily visits to Mom’s dementia jail. On several occasions, she mocked Mom right in front of me; in one instance making fun of the fact that Mom had to pull herself along with her feet in the wheelchair to which she eventually became confined. Mom wasn’t the only resident I witnessed being subjected to Betsy’s abuse, and one of the care workers confided in me that she would sooner send her mother to hell than place her in a home that Betsy worked in.

Betsy was close to six feet tall, and solid. Real solid. They called her “the sergeant major.” Mom, on the other hand, was five foot two, osteoporosis having shrunk her a couple of inches in the previous decade. She was in her mid-eighties, living with dementia, and sedated with antipsychotic drugs because some of the staff–the ones who failed to engage her in ways that worked for her–found her challenging.

Mom’s bath time aggression was carefully recorded in the nurses’ notes I got copies of when I launched a legal bid to get control of her care in August 2013.

On April 12, 2013, for example, Betsy wrote:

Then a week later:

Hmmmm. So it wasn’t okay for Mom to call out for help when she felt threatened, and under attack, but it was perfectly fine for Betsy to do so?

I know Mom’s reactions could have been prevented with the right approach; I know it with one hundred per cent certainty. But Betsy either didn’t know the right approach, didn’t have time to use it or didn’t want to use it. Caroline or I helped Mom shower every morning for more than a year, and Mom never hit, slapped, kicked or pinched either of us. Ever. Sometimes she was slightly reluctant, saying she didn’t need a shower (for example), but we always managed to convince her, and the process always unfolded without incident. In fact, mostly it was a pleasant experience for her and for us. But Betsy didn’t use the right approach, and everything went pear shaped as a result.

Of course Mom and dementia were blamed for the “bad bath time behaviour,” and when things got really out of control, they gave her an extra dose of whatever to subdue her. That’s why and how she ended up like this on that failed photoshoot Friday in 2014:

This video of my catatonic mom haunts me. I can’t imagine anyone watching it without being shocked, even horrified. It reminds me of the final scenes of One Flew Over the Cuckoo’s Nest in which Jack Nicholson’s “troublemaker” character Randle McMurphy is made vegetative after being lobotomized. I remember crying when, out of love and compassion, McMurphy’s big native friend (Chief) kills him by smothering him with a pillow. I never dreamed I would one day see the same vacant look in my mother’s eyes.

We don’t lobotomize people anymore–for good reason. As one writer puts it:

“It was a barbarous procedure with catastrophic consequences, and yet it was once widely accepted and even earned a Portuguese doctor a Nobel Prize. In the annals of medical history, it stands out as one of medicine’s biggest mistakes and an example of how disastrously things can go wrong when a treatment is put into widespread use before it has been adequately tested.”

Maybe one day we will also stop giving antipsychotic drugs to people living with dementia for the same undeniable reasons, and they won’t be tortured and abused like my mother was for the last four years of her life.

#BanBPSD

*not her real name

7 reasons i post “ugly” pictures of my amazing mom on social media

drugs, not dementia, robbed me of my mom and her of her mind

four years later is too late for my mom. but it’s not for others.

101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging

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Take my short survey on behaviour here.

Advocacy, Antipsychotic drugs, Toward better care

drugged & drooling

June 2, 2019June 2, 2019 My Alzheimer's Story

Many of the comments people make on my posts, and the stories they send me by email and snail mail break me heart. Some literally bring me to tears. This is one of them – a comment CL made when I posted “an open letter to the dementia community worldwide” on the MAS Facebook page:

“When my father was in the hospital for a stroke, a gentleman used to show up every day. He was an older patient, and he used to tell my dad great stories and jokes from his younger years. My dad thoroughly enjoyed these daily visits.

One day my dad asked me to check on “Robbie” because he hadn’t seen him in a couple of days. So I checked with the nursing staff and they said he was moved to a different ward. So I went to look for him. I found him restrained in a chair, in a zombie daze and drooling. It was heartbreaking!

When I questioned the nurses, they said someone complained about him walking around talking to other patients, so they did this horrifying drugging and restraining!. I cried. Then I told my dad he had died. I couldn’t tell him the truth. It was awful!.

P.S. Robbie never hurt or touched anyone. He just stood at the bottom of the bed and talked. Still haunts me to this day. Five years now.”

The very same thing happened to my gregarious and fun-loving mom: she was physically and chemically restrained for being friendly and sociable. Just the thought of it still makes me cry. Imagine the state of poor “Robbie,” who had brought others joy with his “wandering,” if his friend’s daughter felt it was better to tell her father Robbie was dead rather than tell him the truth of what had happened. Better to say he was dead. Think about that.

I believe it’s a crime to do this to vulnerable people, and in particular to vulnerable elderly. We must stop it. And we must #BanBPSD.

drugs, not dementia, robbed me of my mom and her of her mind

four years later is too late for my mom. but it’s not for others.

safety pins & call bells

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Challenges & Solutions, Life & Living, Toward better care

20 actions to foster and maintain dignity in dementia care homes

May 30, 2019May 30, 2019 My Alzheimer's Story

I was thrilled to learn that Australian dementia care advocate, author and activist Kate Swaffer included an excerpt from my “open letter to the dementia care community worldwide” in her statement to the Australian Royal Commission on Aged Care Quality and Safety (read the full statement here).

Kate’s comprehensive and thought-provoking statement comprises a wealth of information including a list of 10 Dignity in Care Principles, which Kate originally published on her blog in 2014.

Inspired by her list, I added ten more items to create twenty actions that long-term care providers and their staff could implement to foster and maintain the dignity of people living with dementia (PLWD) who reside in their facilities.

Maintain zero tolerance of all forms of neglect and abuse
Support people PLWD with the same respect you would want for yourself and/or members of your own family
Treat each person living with dementia as an individual by offering a personalised service
Address PLWD using their preferred name, title or other form of address
Enable PLWD to maintain the maximum possible level of independence, choice, and control
Encourage PLWD to do what they enjoy, whatever it may be, and give them the means to do it
Listen when people express their needs and wants, especially when they uses actions to communicate rather than words
Respect people’s privacy
Provide appropriate, well-designed living environments that are comfortable, easy to navigate and welcoming
Ensure people are able to complain without fear of retribution
Engage with family members and carers as care partners
Assist PLWD to maintain confidence and positive self esteem
Act to alleviate loneliness and isolation
Avoid the use of physical and chemical restraints
Provide interesting, stimulating and appropriate things for PLWD to do
Give PLWD opportunities to contribute and lead meaningful lives
Treat PLWD like people, not like objects, or as if they are “lesser than”
Connect with PLWD as fellow human beings
Focus on what PLWD can do, not on what they can’t
Avoid blaming, shaming and taming!

Preserving dignity is part of respecting human rights. We need to ensure it happens across the board.

20 paths to dementia care homes away from home

7 ways to improve dementia care in less than three minutes

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Joy, Life & Living, Love, Memories, Music, Videos

everyone should be helped to let the sun shine in

August 27, 2017August 27, 2017 My Alzheimer's Story

Mom was taken from her home on November 16, 2012, (the day our best wasn’t good enough), and “placed” in a long-term care facility (LTCF).

Like every human being (whether they live with dementia or not), Mom deserved to be treated with dignity and respect and to be provided ongoing opportunities to engage life in whatever way she could until the day she died. She loved to be active, involved, singing, dancing, and interacting with others. Her lively spirit and sense of humour are captured in the videos below, taken on the morning of November 16, 2012, the day she went to the nursing home.

Sadly, Mom deteriorated more in the first eight weeks she was in LTC than she had in the previous two years. She was given increasing amounts of antipsychotic drugs (a form of abuse), and her care was neglected in many ways. The way she was treated is unacceptable. So was the treatment of Ran Shirdan’s grandmother, Lori Derkevor’s father, Sue Turner’s parents, and countless others worldwide.

We need to change the way we care for the elderly, particularly people who live with dementia, and particularly those in LTCFs. Most deserve much much better than what they’re getting. They should be provided the kind of love and support Caroline and I gave Mom when we lived with her in her own home.

Everyone should be pampered:

Everyone should be helped to let the sun shine in:

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Image copyright: jorisvo / 123RF Stock Photo

Resources, Tips, tools & skills, Toward better care

30 powerful things you could say to reduce anxiety and anger, and connect with people who live with alzheimer disease

July 26, 2017October 21, 2018 My Alzheimer's Story

When people who live with alzheimer disease and other dementias (PLWD) feel threatened or afraid, they react just like most other living things with one of three responses: fight, flight, or freeze. These normal responses are often pathologized in PLWD. When they “fight” back, it’s called “being combative,” or “aggressive behviour.” When they try to flee, it may be labeled as “wandering,” or “exit seeking behaviour.” This unfortunate labeling often leads to PLWD being medicated and/or sedated instead of understood.

How can dementia care partners help reduce anxiety and anger, and thus the responses they generate? I talk about five proven strategies here. Likewise, love, support and compassion can help defuse a crisis situation, calm troubled waters, and help create positive outcomes while averting unwanted ones. In fact, understanding and appreciation (when we mean it of course!) can help lay the foundation for better relationships with everyone, whether they live with dementia or not.

Here are 30 specific things (and lots of additional ideas) care partners and care workers might say to help people who live with dementia feel good about themselves and their relationships:

1) I love you
2) I understand that you feel angry/anxious/afraid/unhappy/sad/hurt/trapped/confused/upset/lost
3) You have a right to feel angry/anxious/afraid/unhappy/sad/hurt/trapped/confused/upset/lost
4) This is maddening/hard/scary/upsetting/unfair/difficult/confusing
5) You are right / I agree
6) It’s not your fault
7) I’m sorry
8) You are special to me
9) I see you and I hear you
10) You’re not alone
11) You don’t have to be afraid
12) I’m proud of you
13) I have confidence in you
14) I will hold your hand
15) You are important to me
16) Your life is precious
17) The world is a better place with you in it
18) I see your spirit shining
19) I’m lucky to have you
20) I want to learn from you
21) You are beautiful
22) You are one of the best things in my life
23) I value the time we spend together
24) Your opinion is important, and you count
25) I feel good when we’re together
26) You have taught me many things
27) I’m grateful for all you have done for me
28) I love the way you: live your life / talk / sing / notice small things / smile / laugh / look / tell jokes / cut carrots / butter bread / compliment others / take care of yourself / take care of others / share your time with me / tell stories about your life / take pleasure in small things / want the best in life / keep going / fight for your rights / speak volumes in silence / make your voice heard / assert yourself / are kind to others / have lived your life / take the bull by the horns / don’t give up
29) I enjoy: holding your hand / singing with you / preparing meals with you / listening to music with you / just being with you / walking with you / seeing you smile / hearing your voice / watching the birds with you / picking flowers with you / hearing you tell stories / sharing memories with you / being inspired by you / witnessing your courage / spending time with you / helping you live as you want to / your sense of humour / dancing with you / living with you / appreciating good days with you / helping you / seeing you thrive / the sound of your voice / the touch of your hand / the look in your eye / our relationship
30) I’m glad: we’re spending time together / you are still with me in this world / you are my… (mother/father/brother/sister/husband/wife/daughter/son/friend) / we know each other / you love me / you are in my life / we share joyful moments together / we overcome challenges together / we have each other / we’re connected
30) You are: amazing / beautiful / smart / my hero / helpful / wise / clever / funny / huggable / lovable / my friend / inspiring / courageous / brave / determined / strong / precious to me / capable / loving / patient / feisty / perceptive / insightful / knowing / gentle/ perfect just the way you are

Suggestion: use the words, attributes and experiences that have the most meaning to you and your care partner/client.

https://myalzheimersstory.com/2015/10/16/im-sorry-is-hard-but-it-may-also-be-the-most-powerful-part-of-bangs/

https://myalzheimersstory.com/2015/05/20/7-powerful-things-a-care-partner-can-say-to-stop-anger-and-aggression-in-a-person-with-dementia/

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Image copyright: worradirek / 123RF Stock Photo

Resources, Tips, tools & skills, Toward better care

5 ways to help people who live with alzheimer not ‘fade away’

July 10, 2017February 26, 2020 My Alzheimer's Story

I’m delighted to repost this excellent article by Judith Graham, which originally appeared on Kaiser Health News, a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Alzheimer’s disease has an unusual distinction: It’s the illness that Americans fear most — more than cancer, stroke or heart disease. The rhetoric surrounding Alzheimer’s reflects this. People “fade away” and are tragically “robbed of their identities” as this incurable condition progresses, we’re told time and again.

Yet, a sizable body of research suggests this Alzheimer’s narrative is mistaken. It finds that people with Alzheimer’s and other types of dementia retain a sense of self and have a positive quality of life, overall, until the illness’s final stages.

They appreciate relationships. They’re energized by meaningful activities and value opportunities to express themselves. And they enjoy feeling at home in their surroundings.

“Do our abilities change? Yes. But inside we’re the same people,” said John Sandblom, 57, of Ankeny, Iowa, who was diagnosed with Alzheimer’s seven years ago.

Dr. Peter Rabins, a psychiatrist and co-author of “The 36-Hour Day,” a guide for Alzheimer patients’ families, summarized research findings this way: “Overall, about one-quarter of people with dementia report a negative quality of life, although that number is higher in people with severe disease.”

“I’ve learned something from this,” admitted Rabins, a professor at the University of Maryland. “I’m among the people who would have thought, ‘If anything happens to my memory, my ability to think, I can’t imagine anything worse.’

“But I’ve seen that you can be a wonderful grandparent and not remember the name of the grandchild you adore. You can be with people you love and enjoy them, even if you’re not following the whole conversation.”

The implication: Promoting well-being is both possible and desirable in people with dementia, even as people struggle with memory loss, slower cognitive processing, distractibility and other symptoms.

“There are many things that caregivers, families and friends can do — right now — to improve people’s lives,” said Dr. Allen Power, author of “Dementia Beyond Disease: Enhancing Well-Being” and chair for aging and dementia innovation at the Schlegel-University of Waterloo Research Institute for Aging in Canada.

Of course, the final stages of Alzheimer’s disease and other types of dementia are enormously difficult, and resources to help caregivers are scarce — problems that shouldn’t be underestimated.

Still, up to 80 percent of people with dementia are in the mild and moderate stages. Here are some elements of their quality of life that should be attended to:

1 ) Focus On Health

One notable study analyzed lengthy discussions between people with dementia, caregivers and professionals at six meetings of Alzheimer’s Disease International, an association of Alzheimer’s societies across the world.

Those discussions emphasized the importance of physical health: being free from pain, well-fed, physically active and well-groomed, having continence needs met, being equipped with glasses and hearing aids and not being overmedicated. Cognitive health was also a priority. People wanted “cognitive rehabilitation” to help them learn practical techniques for promoting memory or compensating for memory loss.

Up to 40 percent of people with Alzheimer’s disease suffer from significant depression, and research by Rabins and colleagues underscores the importance of evaluating and offering treatment to someone who appears sad, apathetic and altogether disinterested in life.

2 ) Foster Social Connections

Being connected with and involved with other people is a high priority for people with dementia. Based on research conducted over several decades, Rabins listed social interaction as one of the five essential elements of a positive quality of life.

But fear, discomfort and misunderstanding routinely disrupt relationships once a diagnosis is revealed.

“The saddest thing that I hear, almost without exception, from people all over the world is that family, friends and acquaintances desert them,” said Sandblom, who runs a weekly online support group for Dementia Alliance International, an organization for people with dementia that he co-founded in January 2014.

3 ) Adapt Communication

Not knowing how to communicate with someone with dementia is a common problem.

Laura Gitlin, a dementia researcher and director of The Center for Innovative Care in Aging at Johns Hopkins School of Nursing, offered these suggestions in an article in the International Encyclopedia of Rehabilitation: Speak slowly, simply and calmly, make one or two points at a time, allow someone sufficient time to respond, avoid the use of negative words, don’t argue, eliminate noise and distraction, make eye contact but don’t stare, and express affection by smiling, holding hands or giving a hug.

Also, understand that people with dementia perceive things differently.

“You have to understand that when you have dementia you lose a lot of your natural perceptions of what others are doing,” Sandblom said. “So, a lot of us get a little nervous or suspicious. I think that’s a natural human reaction to knowing that you’re not picking up on things very well.”

4 ) Address Unmet Needs

Needs that aren’t recognized or addressed can cause significant distress and a lower quality of life. Rather than treat the distress, Power suggested, try to understand the underlying cause and do something about it.

Which needs are commonly unmet? In a study published in 2013, Rabins and colleagues identified several: managing patients’ risk of falling (unmet almost 75 percent of the time); addressing health and medical concerns (unmet, 63 percent); engaging people in meaningful activities (53 percent); and evaluating homes so that they’re safe and made easier to navigate (45 percent).

5 ) Respect Autonomy And Individuality

Rabins called this “awareness of self” and listed it among the essential components of a positive quality of life. Sandblom called this “being seen as a whole person, not as my disease.”

At the Alzheimer’s Disease International meetings, people spoke of being listened to, valued and given choices that allowed them to express themselves. They said they wanted to be respected and have their spirituality recognized, not patronized, demeaned or infantilized.

In a review of 11 studies that asked people with dementia what was important to them, they said they wanted to experience autonomy and independence, feel accepted and understood, and not be overly identified with their illness.

None of this is easy. But strategies for understanding what people with dementia experience and addressing their needs can be taught. This should become a priority, Rabins said, adding that “improved quality of life should be a primary outcome of all dementia treatments.”

https://myalzheimersstory.com/2015/05/29/101-activities-you-can-enjoy-with-a-person-living-with-alzheimers-dementia/

https://myalzheimersstory.com/2014/06/16/5-things-i-never-knew-until-i-sang-with-my-alzheimers-mom/

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Resources, Tips, tools & skills, Toward better care

7 ways to preserve dignity

July 7, 2017April 20, 2018 My Alzheimer's Story

There’s lots of talk about preserving the dignity of people who are vulnerable, including the elderly and infirm, those who are differently abled, those who are approaching end of life and those who live with dementia, among others. But how can we actually do that?

Reflecting on what dignity is might be a good place to begin. Here’s are three definitions to kick-start the process:

1) the state or quality of being worthy of honour or respect.

2) a sense of pride in oneself; self-respect.

3) An individual or group’s sense of self-respect and self-worth, physical and psychological integrity and empowerment.

Beyond that, here are seven ways to preserve the dignity of others, and in the process preserve your own (downloadable the PDF below):

Deepen your understanding
Identify & satisfy needs and wants
Give freely from your heart
Never patronize, infantilize or demonize
Imagine yourself in their shoes
Tear down biases & barriers
Yearn to collaborate, not to control

See 5 ways we rob people who live with dementia of their dignity, and 10 practical ways to preserve the dignity of people who live with dementia.