The government must act to improve the human rights of dementia patients and carers
Few now question the right of parents to stay with children in hospital – so why don’t patients with dementia have similar rights?
John’s Campaign is single-issue and simple. It is for the right of carers to stay with people with dementia if they are admitted to hospital. It is named for the father of my friend, the writer Nicci Gerrard, whose father’s dementia was catastrophically accelerated by a stay in hospital where he was largely cut off from his family.
In the 1960s we had to campaign for parents to have the right to stay with their children in hospital. Few question this right now. So why does the same right not apply to carers of people with dementia?
This information comes to us from the Global Action on Aging, based in New York City. The copyright at the bottom of the page is for 2002, so my best guess is that this is an old article. However, I wanted to post it here because it gives some insight into the care policy in Denmark.
This question was posed on a support forum for people working with memory problems (family, professionals, anyone interested in memory issues and memory care). It’s not an uncommon question. In fact, many people who are close to someone with dementia worry that they are also showing signs of the degenerative syndrome. And it’s also known that people who care for someone with dementia tend to have more health risks and higher rates of depression – also risk factors for developing dementia. While depression, chronic lack of sleep, and stress can cause symptoms that can be mistaken for dementia, there are distinct differences. The takeaway: dementia is not only about memory loss!
This is an inspirational and educational post – yea! The idea is that EVERY SINGLE ONE OF US can help to improve dementia care. You don’t have to be providing direct care to make a difference in someone’s life. In fact, it could be as simple as smiling and holding a door for someone else.
If you think you are too small to make a difference, try sleeping with a mosquito.
~His Holiness, the 14th Dalai Lama
Family members to provide personal care to someone with dementia are more likely to have higher levels of stress, higher rates of depression, and more health complications than people who care for other conditions and than non-carers. They are absorbing a lot of care responsibilities as dementia progresses and sacrificing their own privacy, personal time, relaxation, social activities, and often self-care activities. They are selflessly giving themselves to benefit someone else. And if that doesn’t bring some humanity warmth into your heart, then you need to watch some videos on kittens or something and then come back and read this post.
I have a ton of respect for family care partners. They are amazing, special people.
And I kinda want everyone else to realize this as well.
If you know someone who is a carer, you can lend a helping hand! And by doing even small things to make their day brighter, easier, and less stressful, you are not only helping them out but also helping to make them better able to provide care for someone else.
They may be hesitant at first, but if you really mean it, keep offering and give specific ideas of what you can do for them. Here are 20 ideas of how you can make a difference. ANYTHING will be a help. If you try any of these out, I would love to hear about your experiences in the comments below.
Happy helping 🙂
Have a short coffee or tea break and hang out for 30 minutes of easy chatting
Help them with laundry – offer to pick it up and bring it back all clean the next day, or spend time with them and help them sort and fold laundry in their own home
Offer to wash the dishes
Offer to bring over dinner “I doubled my recipe and have enough for 2 families, can I bring over some?”
Clean out or wash their car
Let them know that they can call on you for support
Mow their lawn or rake their leaves “I’m doing yardwork this weekend, can I come over and do yours while I’m at it?”
Shovel snow off their sidewalks
Offer to clean their gutters in the Spring
Put their garbage bins back after collection day
Bring them their mail
Hold a door for them
Ask them how they are – but be sure to LISTEN to them as well
Let them know you are going to the grocery store or pharmacy and ask if you can pick anything up for them
Offer to sit in for them for a few hours one day so they can run errands, exercise, or have alone time
Give them a gift certificate for a massage, pedicure, whatever they might enjoy, and offer to sit in for them during that time
Send a card
Make a phone call
Send an email or text message
Offer to pick up their kids from school or activities, or to take their kids for a slumber party night
If you haven’t checked out the Alzheimer’s Reading Room, I recommend heading over there after you finish reading my blog. It was founded by Bob DeMarco, who is a noted leader in the Alzheimer’s community, having done many lectures, speaking engagements, and building the Alzheimer’s Reading Room to educate all.
The goal of the Alzheimer’s Reading Room is to Educate and Empower Alzheimer’s caregivers, their families, and the entire Alzheimer’s community.
At its core the Alzheimer’s Reading Room is about helping members of the Alzheimer’s Community understand, cope, and communicate with persons living with Alzheimer’s and related dementia.
Do you know someone with dementia? Do you have a hard time figuring out how to talk to them or what you can do to help? Are you not sure how to talk to friends about a recent diagnosis of dementia in your family? This article is from the Alzheimer’s Association in Denmark and gives 7 tips on how you can help a person with dementia (and help yourself to learn more about it on the way).
Happy reading and I hope it brings good experiences!
I have made my own translation from Danish, so some of the words may be changed, but the meaning has been preserved. I have also removed the videos, as they are in Danish. Dette indlæg er oprindeligt på dansk, læse det her (og med videoer).
This post is from Dementia Alliance International (DAI), who promote education and awareness about dementia. The original text may be slightly modified for this post.
Kate Swaffer’s keynote speech highlights some of the most relevant issues in dementia care and living with dementia: the need to address the individual, not just their symptoms; human rights issues; balance in dementia research funding; rehabilitation and palliative care in dementia care plans; better diagnostics; delaying institutionalization; inclusion; breaking stigma – I mean, wow, she really gave a great speech! She also touches on two other important topics: psychosocial stimulation and maintaining work and contribution to society, mentioning her own experience and drive to continue contribution through advocacy.
She is a champion in breaking down stigma and raising awareness for people with dementia, particularly young-onset dementia (before age 65). Head on over to her website, have a read, and sign up to follow her.
If you’re like me, you weren’t surprised to read about the recent Age Wave/Merrill Lynch study finding that two-thirds of retirees now say they are living in “the best home of their life.”
I, too, am living in my dream home, but with a different cast of characters than I could have ever imagined. When a divorce left me living alone in newly remodeled 5-bedroom home in 2008, I searched for and found four roommates to fill the bedrooms.
Since I started this blog, I have been frustrated with the small font. So, today, I have had enough! I decided to learn to code in order to increase the font size so that more people can read the site. The font is a little small for me, too, and I’m only 33 so I don’t think it’s due to age-related vision changes. Well, coding did not go so well and I didn’t want to pay to upgrade my site as I am not making money off of it or promoting a business. In the end, I decided to go with another design theme that already has larger font.
Great, so now I have larger font and hopefully everyone can read my posts, at least better than before. But, with the new theme, I have to manually change the colors of hyperlinks. This means, that if I don’t want to go and change the color of the text each time I put a link to another website or post (and I don’t), it’s a little tricker for people to know that it is even a link! I try to put some leading text, like “read more here,” but I must say I am frustrated that WordPress.com can’t accommodate readers of all ages and ability levels without the author paying for it (and I’m not even sure you can after you buy their premium package).
In further trying to make my site accessible for anyone who would want to visit, I used a few web sites that have some good information worth sharing with all of you. I had also made a blog post on Errorless Learning and design of technologies for aging adults. This was part of the work for the start-up I was involved in for the past year. That post doesn’t necessarily fit in with the Dementia Adventure theme, but I will likely be posting it here anyway, at least to get the information out to the public.
In the meantime, please take a look at the handful of websites I link below. I hope you get some inspiration for updating your website as well!
6 Things I Wish I Knew Before I Cared for My Parents
You’ve heard the expression “hindsight is 20/20,” and when it comes to family caregiving, it absolutely applies. Get any group of midlife adults together and you’ll hear caregiving “war stories” about what they’re facing when it comes to aging parents, and how completely unprepared they feel for what’s ahead.
“We are not prepared for this situation as a culture — there just isn’t enough information out there,” says Chicago-based Mary Kay Buysse, director of the National Association of Senior Move Managers (NASMM), who has had many years of experience in helping older adults make changes to their living situations. “People are blindsided when suddenly there’s a crisis and Mom needs help and they’re completely in the dark as to what’s available and how to find it.”
To help you navigate this process with more insight, we’ve put together tips from experts and fellow caregivers on what they know now that they wish they’d known when they started the process of finding a safer situation for Mom and Dad. Having been there, done that, they have a wealth of wisdom to pass along to help you learn from their mistakes.
As I read this article, I thought that these would be some great tips for caregivers! Some days, everything does seem to go wrong, and with a stretch of these days in a row, it can really burn you out. So I share the article here and hope that it provides some light at the end of the tunnel!
8 Things To Remember When Everything Is Going Wrong
“Today, I’m sitting in my hospital bed waiting to have both my breasts removed. But in a strange way I feel like the lucky one. Up until now I have had no health problems. I’m a 69-year-old woman in the last room at the end of the hall before the pediatric division of the hospital begins. Over the past few hours I have watched dozens of cancer patients being wheeled in by wheelchairs and rolling beds. None of these patients could be a day older than 17.”
That’s an entry from my grandmother’s journal, dated 9/16/1977. I photocopied it and pinned it to my bulletin board about a decade ago. It’s still there today, and it continues to remind me that there is always, always, always something to be thankful for. And that no matter how good or bad I have it, I must wake up each day thankful for my life, because someone somewhere else is desperately fighting for theirs.
Truth be told, happiness is not the absence of problems, but the ability to deal with them. Imagine all the wondrous things your mind might embrace if it weren’t wrapped so tightly around your struggles. Always look at what you have, instead of what you have lost. Because it’s not what the world takes away from you that counts; it’s what you do with what you have left.