The Role for Dementia Consultant Teams

I came across this article on the Changing Aging website. It’s a great resource on changing perceptions and practices surrounding aging. Check it out, you won’t be disappointed!

The Role for Dementia Consultant Teams

In my last post I criticized a reporter for the Australian Financial Review for his characterization of people living with dementia, and of our aging population in general. My comments were aimed purely at his offensive stereotypes, and did not address deeper issues around the subject matter. Now that the furor over that article has subsided somewhat, it’s time to tackle that deeper concern.
Continue reading

Advertisement

This is me – Alzheimer’s Society

I heard of the This is me tool in a recent online course about dementia that I am taking. The information below is taken from the Alzheimer’s Society’s webpage. You can access their page by clicking on the title, below, or on the links in this post.

This is me – tool for people with dementia receiving professional care

Our popular tool, This is me, is for people with dementia who are receiving professional care in any setting – at home, in hospital, in respite care or a care home. It was originally developed for people with dementia who were going into hospital.

This is me is a simple and practical tool that people with dementia can use to tell staff about their needs, preferences, likes, dislikes and interests. Continue reading

Dementia care in Japan is being solved through volunteer schemes, not government

This post comes to us from the UK source, The Guardian. You can read the original article by clicking on the title below. I think that utilizing volunteers to support dementia is a wonderful strategy! It serves to train and educate the wider public, getting them involved in compassionate care, and also raises awareness and reduces stigma. PLUS, then there is a whole force of people who are trained, ready, and able to help people with dementia to stay active and engaged in their communities and lives.

By Mayumi Hayashi on November 18, 2014

Community projects, such as open houses which provide all-day care, are innovative and low-cost

japan dementia

4.6 million people in Japan are living with dementia. Photograph: Franck Robichon/EPA

With the world’s fastest ageing population where one in four are over 65 and there are 4.6 million people (15% of the older population) living with dementia, Japan is struggling to find sustainable and affordable solutions. With the world’s highest level of debt – 230% of national GDP – these solutions to the challenge of dementia must be both innovative and cost-effective. Continue reading

Cultural awareness improves dementia care for South Asian minorities

This article comes to us from the UK-based news source, The Guardian. You can access the original article by clicking on the title, below.

Cultural awareness improves dementia care for South Asian minorities

Reduced awareness and stigma around mental health can prevent people from the south Asian community accessing dementia care. Continue reading

Book Review! Come Back Early Today

I recently finished “Come Back Early Today:  A Memoir of Love, Alzheimer’s and Joy” by Marie Marley, PhD.  It is Marie’s account of her life partner’s development of dementia, spanning 7 years but also including a lot of stories from their 30+ years together. It is a story about love and about dementia (and many of the things that those encompass).  Continue reading

Danish legislation on GPS and dementia

This article comes to us from Stella Care. Stella Care is a Danish company that solves social problems by using and further developing proven technology, so it can be used for purposes other than originally intended. They specialize in offering small GPS trackers suitable for people with dementia. The article by Stella Care is originally in Danish (you can access it by clicking on the title, below), and I have translated and edited the article into English. 

Legislation on GPS for people with dementia (and Stella Cares role)

Continue reading

Calming people with dementia without medications

I came across this article on nextavenue.org, a great source of information and advice for those 50+. Check them out, there’s lots to find on activity ideas, financial issues, working and volunteering, staying healthy, and much more.

Calming Dementia Patients Without Powerful Drugs:

Nursing homes can do better than medicating residents into a stupor

Continue reading

Dementiaville

I have seen a bit of buzz on the dementia-related internet lately about “Dementiaville.” Wondering what it was, aside from a blog by the same name (you can read that blog here), I found it is a UK-based program on new approaches to dementia care.

Click on the link below to go to the site and watch the episodes, or find out how to learn more about dementia (for FREE) by clicking the link at the bottom of this post.

Happy learning!

Dementiaville

Imagine travelling back in time with your loved one to discover the person they once were. This series explores a radical approach to Dementia care.

Learn more with The Open University

Visit the OU’s free learning website to access a collection of articles, listen to a short audio story about living with dementia (Louise’s Story) and have your say on a range of issues and different perspectives that arise.

10 lessons learned from people with dementia

I was happy to come across this post on Huffington Post. I was just talking with Dan Mogensen from MindBuddy about how I would like to make a documentary that highlights some of the good things about dementia (philosophical views of personhood, perception of reality, changing viewpoints, mindfulness, humor, challenging individuals and society to accept and care for people who have different cognitive processes, increased focus on quality of life, etc. – we talked about a lot of things).

While this article isn’t necessarily focused on these ideas, I like (and think it’s important) that there is a growing trend in not focusing on the doom and gloom of dementia. Life doesn’t end with a dementia diagnosis. A person’s personhood and personality don’t end with a dementia diagnosis. Relationships and social meaning don’t end with a dementia diagnosis. They will take new forms and meanings, and will give new insights if we take the time to notice. Continue reading

Who takes care of the caregiver?

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.

Rezek-MindfulnessForCarers-C2W Continue reading

Dementia village coming to Denmark!

Odense to build Denmark’s first dementia village

Du kan også læse denne indlæg på dansk her.

04. June 2015
By: ULRIK SASS
Odense bygger Danmarks første bydel til demente

OK-Fund contacted Odense Municipality about a year ago to create a one-of-a-kind dementia offer in Denmark. It happens now with the construction of an entire new district with dementia. The key for us was to find a municipality that is willing to take the lead and dare to think new , says OK Foundation director Michael Brostrøm who here signs the agreement with the Mayor Anker Boye ( S ) , Councilman per Berga (EL ) and urban and cultural councilor Jane Jegind (V).

Inspired by Holland included new dementia city precinct – OK Foundation builds and operates the “City of Life.” The ground has yet been found.

Odense: “City for Life” is the name of a whole new city precinct; a district which from 2018 will house between 200 and 300 people with dementia.

Continue reading

Molly’s Kilt: Another True Dementia Care Story

I came across this article through LinkedIn.

“Kilt:  A costume sometimes worn by Scotchmen in America and Americans in Scotland” – Ambrose Bierce

By , 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

Immigrants with dementia in Denmark

The number of elderly immigrants with dementia is increasing

Written by Anders Reinholdt September 24, 2014

In the future, there will be significantly more elderly immigrants with dementia, and by 2040 as much as 67 per cent of the older immigrants will be from non-Western countries. This provides a number of challenges in the health services and care sector.

The Migration School is the largest training in the care of minority groups in Scandinavia and the first research projet in Europe which has focused on diagnostic methods associated with dementia. It writes the Capital Region in a press release.

Doctors and caregivers in dementia often face a number of challenges in working with people with a cultural and linguistic background far from the Danish.

Neuropsychologist Rune Nielsen PhD, of the National Dementia Research Center and head of the Danish part of the project, explains:

First, older immigrants are generally less likely to seek medical advice in connection with memory problems. Second, the health care sector often has difficulty diagnosing those who do seek help because of language and cultural barriers. And thirdly, Denmark has no special care services that meet the often different needs of elderly immigrants who actually are given a dementia diagnosis.

Memory Failure is a natural part of aging

The reason why immigrants are less likely than other citizens to seek help if memory fails is partly due to the lack of general knowledge about dementia, and partly due to many viewing dementia as a shameful disease that you do not talk about.

There is a lot of work in raising awareness about what dementia is and that there is help at hand. We assume that only about 10 per cent of the expected number of immigrants with dementia are actually being diagnosed by a doctor. In other words, there are many who go around without getting the help they need, says Rune Nielsen.

Diagnostic tools are suitable only for Danish language and culture

The few immigrants who seek medical assistance risk a worse clinical investigation than patients with the Danish language and cultural background. The result is often less accurate diagnosis.

The diagnostic tools that doctors and neuropsychologists use are based on the patient attending a Danish school and being familiar with Danish culture. (For example, the cognitive tests used in Denmark would include questions about Danish current events, such as the current Prime Minister, and common phrases in Danish – all of which are relevant to the culture and language). But many older immigrants have low education and in many cases are also lacking a general understanding that it requires many studies and many visits to the clinic before the doctor can reach a potential diagnosis.

Just the fact that the diagnostic tools require knowledge of the Danish language and culture is a significant problem. By comparison, an older person who was born and raised in Denmark would face the same challenges to be thoroughly examined for cognitive problems in England, for example, although they may speak the English language, says Rune Nielsen.

New cross-cultural test methods

There is therefore a need for new cross-cultural diagnostic tools when a suspected dementia diagnosis should be confirmed or denied. But dementia often results in changes in personality and behavior, which can make it very difficult for the relatives to provide the care.

Today, it is about 7% of all Danes older than 65 years who live in nursing homes, while only 1% of the older non-Western immigrants in Denmark living in a nursing home.

There can be many reasons that immigrant families do not send their elders to a Danish care center. Firstly, care centers are either linguistically or culturally attuned to their health and care responsibilities. Secondly, there is an economic aspect, where some immigrant families simply cannot afford nursing home care. And third, there is a tradition for – and expectation – that the children take care of the older generation. But this not always in harmony with the Danish housing and culture, where it is the norm that all adults in the household work outside the home.

Diversity Nursing Homes

Denmark has two diversity nursing homes, in Aarhus and Copenhagen. They can be seen as the first step in relation to equip the Danish care sector for the growing group of senior citizens with different cultural and linguistic backgrounds. Whether this is sufficient to address the growing needs and the many, often complex, issues related to cross-cultural care, only the future will tell.

Dementia and the Caregiver Guilt Trip

Dementia and the Caregiver Guilt Trip

Posted by Kay H. Bransford on  in A Day in the Life of Dementia

I’ve been feeling overwhelmed by the ongoing journey with mom. Two weeks ago, I sat and observed her in the community center before going up to say hello and she looked so sad. I left wondering if we are doing right by mom and was in a funk for days over it. My mom told me for 30 years she never wanted to be a burden to her children which is why they moved into a Continuing Care Retirement Community (CCRC). A quick tour through my blog will tell you a very different story. I am honored to be able to advocate for her, but when she goes through periods asking me to take her with me, my stomach drops. I feel guilty that we should have moved her in with us, not into this memory care community.

In an instant my funk is lifted thanks to a comment by a woman I met at a business function. She told me her mom has dementia and her dad has been telling her over and over “If I go first, your mom is going to beg you to let her move in with you. Don’t do it, she would never have asked for that. It’s the disease, not your mother talking.” In an instant, this woman helped me realize what I knew, but emotionally got mired in guilt, and could not recognize.

Continue reading

5 Ways Memory Care Will Change By 2025

This is a re-post from Seniorhousingnews.com.

Written by Tim Mullaney

Senior housing providers recognize the rapidly growing need for memory care services, with recent industry surveys showing construction booming in this area.

Continue reading