Dispelling respite myths for people with dementia and their carers
ReThink Respite is a new online resource aiming to support people with dementia and their carers and help them to better understand the benefits of respite services.
“There is plenty of evidence to show that respite can sustain carers to continue in their caring role and keep the person with dementia at home for longer, and yet the proportion of carers that use available respite and other support programs is low,” according to project leader, Dr Lyn Phillipson.
“The ReThink Respite resource will help people better understand respite services by dispelling myths and educating carers of the benefits of respite services. Ultimately, we want to increase uptake and inform and shape service delivery of respite in the community,” she adds.
Read more at: https://news.agedcareguide.com.au/2016/04/05/dispelling-respite-myths-for-people-with-dementia-and-their-carers/
Visit the ReThink Respite webpage at rethinkrespite.com
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?
Recently, I was contacted by a Danish journalist through my blog here. At first, I was super excited that a journalist was quoting me and wanted some further information! I mean, that’s great news and a great feeling 🙂
Then, I realized that she was quoting someone else and I’m not exactly sure why she thought it was me….
So, I wrote her with the real author’s name and with a response that I hope will be useful for her in her article. Her mail and my response are below – I have translated them into English. Continue reading
This post comes to us from familyaffaires.com. I came across it on a LinkedIn post by a gentleman I met in a fantastic online course about dementia, Mike Good. Mike Good is founder of Together in This, an online community helping family members caring for someone with Alzheimer’s. Through short, informative articles and easy-to-use tools, such as the Introductory Guide to Alzheimer’s, he helps them take control and have peace-of-mind they are doing the right things.
You can access the original article on familyaffaires.com by clicking on the title, below.
We often hear about therapeutic activities that are beneficial for the person with Alzheimer’s or another dementia but it’s just as important to consider their care partner – the caregiver.
Living successfully with the disease requires that both care partners enjoy therapeutic enrichment that benefits their mind, body, and spirit.
But because the caregiver is often the only person caring for their loved one, it is difficult for them to find time to enjoy activities that are beneficial for them as well.
There are activities that can be done together that simultaneously meet the needs of the caregiver while providing beneficial sensory stimulation for the person with Alzheimer’s or other dementia:
This is another post that comes to us from Personal Health Records, another WordPress blog. This article gives some tips about caring for a person with late stage dementia. Do you have any additional tips or maybe some insights into how these tips have or haven’t worked for you? Share your knowledge and let us know in the comments below.
This post is about some of the apps out there that are going to be useful and useable for family members and carers of someone with dementia. It’s certainly not a complete list of everything that’s out there, but a summary of the apps that have come across my radar lately.
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 is a re-post from Jessica Kingsley Publishers. You can also read the article on their website by clicking here.
Shake up your view of your demanding and relentless work so that you can start to put yourself at the centre of your caregiving work. Cheryl Rezek, author of Mindfulness for Carers, has written an incredibly honest blog on why it’s important to say ‘no’, putting yourself first, and being mindful of your emotions as a carer.
I came across this article through LinkedIn.
“Kilt: A costume sometimes worn by Scotchmen in America and Americans in Scotland” – Ambrose Bierce
By Stephanie Zeman MSN RN, Nurse, Dementia Specialist, author, “ Kisses for Elizabeth:Common Sense Guidelines for Dementia
May 16, 2015
Sometimes what seems like an insignificant thing can mean the most to a person with dementia. We need to understand this and respect this.
In 1995 I began consulting with several long term care facilities in Northern Virginia, providing them with education and training in dementia care and assisting with the development of dementia units. One of the facilities was home to a patient named “Molly”, a 63 year old woman who had been diagnosed with early onset Alzheimer’s disease. When the staff told me they were having problems with Molly, it was hard to believe. Molly appeared to be friendly, cooperative and interested in her surroundings. However, ever since her admission, she had worn the same outfit refusing to consider a change to anything else. Since she had been at the facility almost 7 weeks, her clothing had become quite soiled and in need of repair.
Bathing and personal care were apparently not a problem for Molly. She happily allowed the staff to assist her in the shower and had changed into pajamas every night. On the fourth night she was there, however, the staff had taken the sweater and kilt she had been wearing from her room intending to launder and clean them. When Molly awoke in the morning they were not there.
When people with dementia become upset, their reactions can range from simply complaining to crying or anger, and in the extreme, they can have what we call a catastrophic reaction. This is what happened to Molly. She simply could not cope with what she perceived as someone stealing her kilt and sweater. Molly was hysterical and combative. Although the nursing assistants tried to explain that her clothes were being cleaned, Molly would not calm down. Finally, the staff found it necessary to contact her doctor to get an order for a sedative. After taking the medication, Molly became lethargic and slept most of the day. In the evening her kilt and sweater were returned.
The staff was now afraid to take Molly’s kilt and sweater away again. Even when she showered, Molly kept them nearby and had taken to sleeping in them at night. Molly had also stopped attending activities and preferred to sit quietly in her room most of the day. However, when I stopped by for a visit, I was surprised at how articulate she was despite her memory loss and some obvious confusion. We spoke about a few things I thought would not be threatening to her. Although the conversation was a little disjointed at times, she told me about her love of cooking and a dog she had once owned. She also told me a little about her family. Molly was Irish and her parents had immigrated to the United States when Molly was 2 years old. At this point in the conversation, Molly simply got up and walked out.
I asked the staff if they had talked to Molly’s family about her attachment to her clothing but they told me that Molly had been admitted when her older sister Kate had a stroke. Kate had recently been admitted to the skilled nursing unit in the same facility for rehabilitation, but had not yet recovered enough to be involved in Molly’s care. Although the social worker had taken Molly to visit Kate twice since their admission, all the staff knew was that neither of the two women had ever married and Kate and Molly lived together for most of their lives. I suggested that the social worker visit Kate alone and see if she could get more information.
When I returned a few days later the social worker had some information for me. Kate was recovered enough to now visit Molly and wanted to attend her care plans, but she herself would also have to remain in the nursing home for extended physical therapy. The two women were down in Molly’s room which gave me the perfect opportunity to ask Kate about the kilt and sweater.
As I approached the room, I heard both women laughing, something Molly had not enjoyed for several weeks. Kate was helping Molly recall funny stories about their childhood and both women held hands as they giggled at the memories.
Kate was more than happy to talk to me as she had been concerned that we would not understand Molly’s need to wear her kilt and matching sweater. She told me that the two women decided to celebrate Molly’s 40th birthday by visiting the town where they were born. The highlight of their trip was the time they spent with their father’s brother, “Collin,” who gave them information on their family history. As they were leaving, their uncle Collin had given each of them kilts and sweaters which represented the colors of their family’s clan. He explained that, had their parents survived, they would have been given similar outfits when they reached their teens.
Kate returned home and hung her kilt in the closet, wondering when she would have the opportunity to wear it. Molly, however, wore her’s frequently saying that it helped bring her a little closer to the parents she could not remember.
When Molly was diagnosed with Alzheimer’s disease, she became very depressed. The kilt and sweater seemed to comfort her and eventually she started wearing the outfit every day. Kate admitted that she had eventually replaced Molly’s kilt and sweater with her own when they became frayed. Recently she had been staying up late once a week to wash and repair the sweater and spot clean the kilt that was left, making sure to return it to Molly’s room before she awoke the next morning.
We now knew why the kilt and sweater were so important to Molly, but the outfit was deteriorating and losing it might be a problem for her. The answer came from Kate who was able to give the social worker the addresses of their cousins who still lived in Ireland. By sending them a picture of the kilt and sweater, the social worker was able to help Kate purchase an additional two outfits that were almost identical to the set that Molly owned. When they arrived a week later the staff set up a rotating schedule for the clothing. Molly would now always have a clean set to wear.
I had the opportunity to visit the facility again to provide some training the following year. Remembering Molly, I asked the staff about her. Once again I found both women in Molly’s room but this time, Kate was able to walk and had moved back home while Molly had declined. Molly was silent. Her dementia had progressed fairly rapidly which was not unusual for early onset Alzheimer’s disease. Kate was there to hold her hand, still telling her stories about their childhood, but there was no laughter. Instead there was perhaps a flicker of recognition in Molly’s eyes while Kate’s were full of tears.
I sat with Kate for a while.. She was facing life without her sister and talked about how much she would miss her. They had been very close all of their lives and had no other immediate family. Kate had always watched over Molly. As I was leaving, Kate made a point of telling me how grateful she had been for the understanding way the staff treated Molly and her need to wear her kilt and matching sweater. I made a point of letting them know this before I left.
What we learned:
Most of us have something from our past that is precious to us. When people suffer from Alzheimer’s disease or other dementias, the memory loss problems can be devastating. Immediate and recent memories are affected first, and eventually only the earliest memories remain. For these individuals, specific items may become extremely important. For Molly it was her kilt and sweater. Using a common sense approach, we found a way to let Molly have her treasured kilt and sweater without having to wear soiled clothing.
Molly’s story is one of 40 that can be found in the book “Kisses for Elizabeth: Common Sense Guidelines for Alzheimer’s and Dementia Care” available on Amazon and the website: Kissesforelizabeth.com
Feeling stuck at home? Here’s a guide to dementia-friendly travel with your loved one. You can do it!
This article is a re-post from Alzlive.com. Check them out for more travel tips and information on Alzheimer’s disease and other dementias.
Do your pre-trip sleuthing to ensure your lodgings are safe and sound for a loved one with Alzheimer’s or dementia.
Not all hotel rooms are created equal! Here are five features to look for or request when booking travel in the United States, Canada or even further afield, if you are adventurous. These amenities provide a safer, better home-sweet-home experience for patients and caregivers.
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!
Families who help care for a person with dementia are the unsung heroes in the global fight against dementia. They carry out the majority of care-related tasks, often unpaid, and often for several years.
If you know someone who is a carer, lend a helping hand! Start with 30 minutes of easy chatting, help them with laundry, offer to wash the dishes or to bring over dinner, clean out their car, or just let them know that they can call on you for support – ANYTHING will help 🙂 You can also read more tips in my post on Helping the Helpers.
As AARP says;
The unpaid contributions of family caregivers to the person being cared for and to society are huge. Yet the health risks and financial hardships that may accompany the caregiving role are substantial and well documented. Thus, there is strong interest in improving family caregivers’ experiences and outcomes, which may include helping to delay or prevent nursing home use or unnecessary hospitalizations of the care recipient.