The Momentia movement uses strong social ties to ward off the effects of Alzheimer’s.
This post comes from the Alzheimer’s Prevention Registry. It’s an international collaborative formed to launch a new era of Alzheimer’s prevention research. Go ahead an check out their website when you’re done reading!
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
This is a re-post from AlzLive. It highlights 5 places to stay in the UK if you are planning to travel with someone with dementia.
by YUKI HAYASHI
Five great vacation homes-away-from-home for you and your relative with dementia.
When it comes to offering the services required for safe vacationing with a dementia patient, the U.K. is years ahead of most countries. It’s critically important that caregivers, who are often on call 24 hours a day, get a break for their own health and sanity. For that reason–not to mention the breathtaking scenery, historic tours and R+R potential–consider going across the pond for your next vacation. Here are five U.K. destinations we love.
I was searching for stories of dementia adventures online, and I was led to a discussion thread on Alzheimer’s Society’s website. It helps to hear what others have been through and how they handled it. Feel free to read their stories and share one of your own. Click on the title below to go to the site.
I just thought I’d create a thread where we can write about the ‘adventures’ we’ve had with our loved ones that have dementia. The thread can be useful for others who can use view it as tales of caution, and a stress relief for the others, because I don’t know, I get a weird need to giggle when you have one of these ‘adventures’ and survive it unscathed!
I came across this book while browsing online. It’s one woman’s account of being a caregiver for her husband with Lewy Body Dementia (LBD). You can purchase a copy of the book on Amazon.
Living with Lewy Body Dementia: One Caregiver’s Personal, In-Depth Experience
By Judy Towne Jennings PT MA
What worked for us was assuming an “Adventure Attitude.” As we negotiated our way through the onslaught of LBD problems, we also created a memorable story. We took three cruises in five years, two of which were in Europe. We loved to travel and didn’t let LBD stop our trips all over the country.
We set a goal to be honest, loving, considerate, and accepting of each other. I am not saying that living with LBD is easy, but with the choice to use a great amount of love, with an even greater amount of humor, we made the most of our days.
Reviewing my years of notes allowed me to see both the successes and the mistakes that my husband and I made. Our successes were impressive; we turned a tragedy into an adventure that left positive memories. We are not super special people. Deciding to fight for quality of life can happen for anyone. My hope is that this story of our adventure will make the path for others a bit wider and less rugged.
I haven’t read the book yet, so can’t give a proper review. But it is on my radar, and my list of books to read! If you have read it, please leave a comment and let us know what you thought of it!
I came across these inspiring articles about living with dementia. You can also find the original articles by clicking on the headlines.
The message is clear: they still have the capacity to enjoy life and want to be involved in their community. So let’s encourage and support them by making sure people with dementia have a good social network and live in the right environment. This is key to their health and wellbeing.
How Older Adults and Caregivers Can Take Advantage of the Summer Weather
This is a re-post from our friends at agingcare.com, offering ideas for getting outside and enjoying the summer weather together!
Enjoying a breezy spring day or the warm summer temperatures don’t have to be a distant memory for elders and caregivers. After being cooped up in the house for possibly months at a time, senior adults can breathe in the fresh air, even if they are experiencing mobility problems. It takes some advance planning and choosing an activity that won’t seem like a chore, but it’s worth getting out of the house, for you and your elderly parent.
Caregiving at a Cookout: Tips for a Good Time
This is a re-post from agingcare.com, a great website with plenty of ideas and resources for caregivers.
Almost everyone looks forward to gathering with family and friends for a backyard barbecue. But if you’ve been dreading going to one because of your responsibilities as a caregiver, never fear: Both you and your elderly loved one can have a fine time, if you plan ahead.
But first, make sure that your relative is in good enough health to attend a party where there will be heat, bugs, noise, smoke from the grill and possibly rambunctious children. Also, check with your hosts to ensure that they understand and can accommodate your loved one’s limitations. If not, find another caregiver to look after your relative while you attend alone; it’s important for you to socialize and recharge.
However, if your hosts are amenable and your loved one is up to it, don’t leave him or her behind. Joan Wright, a certified geriatric manager at NVNA and Hospice in Norwell, Mass., told AgingCare that you should remember that every elderly person was once young, mobile and eager to socialize. “Those desires are still there even if their physical capacity to fulfill them is not.”
Here are some tips from Ms. Wright and others to ensure that everyone has a good time:
Gardening and Growing Together
This is a re-post from agingcare.com, and I hope it inspires you to get your hands a little dirtier 🙂
To grow a more meaningful and healthy connection with an elderly loved one, put on some rubber clogs and head out together to the garden.
At any age, gardening is one of the best activities we can do outdoors, several experts told AgingCare.com. It stimulates all of the senses; awakens our connection with nature and with each other; and rewards us with fresh flowers and juicy tomatoes. “It’s restorative, even if you have dementia,” says Dee McGuire, a horticultural therapist at Levindale Hebrew Geriatric Center and Hospital in Baltimore.
Gardening is also an excellent way for aging bodies to get a moderate-intensity aerobic workout, shed calories and stay flexible, according to a Kansas State University study. That’s one reason why gardening remains popular with Americans well into their golden years. Indeed, about three-quarters of households age 55 or older participated in some form of lawn and garden activity in 2010, according to the National Gardening Association (NGA).
Still, there’s no question that bending, lifting, kneeling, squatting, weeding and pruning—not to mention dealing with sun, heat and bugs– all become more challenging as we grow older.
But there are ways to cope.
10 Ideas for Spring Outings
This is a re-post from agingcare.com, and I am happy to pass on some good ideas for your dementia adventures!
Many aging adults spend the bulk of their time just managing to get through the day. They take care of life’s basics but often don’t leave their home, assisted living center or nursing home, except for doctor appointments and an occasional holiday.
Families and friends might like to take a senior out for some fun but they don’t know how to go about it. Even seasoned caregivers can be stumped for ideas, so here are a few to get started:
- Take a Sunday drive. When I was young, driving around the community to check out home town activity was a Sunday afternoon ritual for many adults. While life is more complicated now, many elders still enjoy watching new construction or being shown how the town that they’ve lived in for decades is changing. For those who live near flood prone bodies of water, spring is a terrific time to take a drive to see how this year’s water levels compare to other years. A twist on this approach is to pick a prime time when cherry trees, crab apple trees or other ornamentals are at their peak and do a flower tour. Getting out of the car is optional, based on your elder’s abilities and wishes.
- Go to the zoo. Who doesn’t like baby animals? Spring is birth time for most species. Rent or borrow a wheelchair if one is needed for longer walks. Not only will your elders see baby animals, they will see young children reacting to the animals. As with everything suggested, watch your loved one for signs of fatigue, thirst, too much sun or other issues that could signal that it’s time to leave, perhaps with a promise to return at another time should they wish to do so.
- Go to a restaurant. When was the last time you took your elder to a restaurant that he or she has enjoyed over the years? Now that snow isn’t a problem, it’s easier to navigate such adventures. Keep in mind that going for a meal at off-peak times is a good idea. That usually means less stress for everyone. Also, elders who are hard of hearing won’t feel as isolated if there’s less background noise.
- Visit a Dairy Queen. One of my mom’s favorite treats was a hot fudge sundae from Dairy Queen. I’d often take her to get a sundae on the way home from a doctor visit or other necessary outing, but occasionally we’d go to Dairy Queen just for something to do. She preferred sitting in the car to eat, but I do suggest encouraging your loved ones to sit outside if the weather’s nice and they are able.
- Enjoy children at play. Watch children swim or play on playground equipment. Spring brings young children out in throngs. People who enjoy children often like hearing their laughter and watching the seeming innocence of this type of play.
- Spring programs. Take your elder to the spring programs that most schools sponsor. This is particularly nice if a grandchild or great-grandchild is involved, but that’s not necessary. If your elder doesn’t know any of the children, then I’d suggest focusing on the younger ones. They tend to be “cuter.” However, if grandchildren are involved, take your elder to watch them perform in their concerts, plays or other activities. You may have to arrange for a spouse or friend to be available to take Grandma home if she gets tired or uncomfortable. A twist on this idea is to attend one of the concerts in the park that many communities have during the spring and summer.
- Have a picnic. Whether you go to a park, stay in your own backyard or use the grounds of the nursing home, a picnic is often possible. If your loved one is able, going to a park would be nice, however many nursing homes have gorgeous grounds and nice areas with tables that accommodate wheel chairs. If all else fails—and I’m aware that this isn’t an outing but sometimes we have to punt—bring a picnic to your loved one in the care home.
- Check out the crops. If your elder has an agricultural background or is interested in wildflowers, try taking a country drive. My parents didn’t have any first-hand agricultural experience, but they still enjoyed driving in the country to see new crops being planted and wild flowers blooming. Tailor this outing to your area of the country and your elder’s preferences.
- Go fishing. A friend told me that his community sponsors events where elders are taken out on pontoons—wheelchairs and all—to fish. Volunteers are there to help with anything the elder can’t do. Just being out on the water and holding a rod can be a thrill for someone who has enjoyed fishing in the past. Again, this can be adjusted to accommodate other pastimes.
- Visit a friend. Many elders lose touch with their peers. Sickness, the death of a spouse and/or difficulty getting around can mean they haven’t seen a dear friend for months or even years. See if you can set up a lunch or just a visit with someone your loved one has enjoyed through the years. Perhaps you can take them both to a park or a restaurant.
Use these ideas as springboards. You know your loved one. What did his or she enjoy in their earlier, healthier days? Don’t be afraid to ask what they miss doing or what they’d like to do. They may not hear those questions very often these days.
If you get a shoulder shrug or an “I don’t know,” then be ready to say, “Sunday looks nice so we’ll go for a picnic.” You may get some resistance but if it seems like simple inertia, just say with a smile that it would make you very happy if they’d do this for you. If a loved one truly doesn’t want to be part of an activity, try whittling down your expectations and suggesting something less strenuous.
As mentioned above, during any of these activities monitor your loved one for dehydration and heat issues if the weather is warm, or chilliness if it’s cool. Older bodies don’t adjust to temperature changes as well as younger ones. Be prepared with sun hats and hooded windbreakers. Also, bring water to drink and watch for fatigue.
And remember, you are doing this for pleasure, so don’t overdo anything.
On the Road: Apps, Sites, Gadgets & Tips
Thinking of traveling this summer? When you are young, you go with the wind, but as you are older, there are a few more considerations to, well, consider. This is a re-post from Senior Planet, and I hope it inspires you to travel and gives you a few tips to make it more enjoyable.
Last week in Aging With Geekitude, Erica kvetched about unusable user manuals and offered her tips for anyone who’s given up on getting any help from them – read about it This week, with summer travel season heating up, she’s sharing her favorite tech for your next road trip.
I adored travel when I was young – throwing a few things in a suitcase and taking off was the ultimate in excitement – but unfortunately, I got old and curmudgeonly. The very thought of deciding what to pack causes me severe anxiety. I need multiple pairs of shoes in case my feet act up. I wind up at my destination wondering how I could have possibly miscounted my medication so badly.
The answer: a road trip.
Recently I forced myself to visit Florida (this was a matter of life and death; if you survived the last winter in the Northeast you know what I’m talking about) and instead of flying, I got in my car and drove all the way. My cozy Ford Focus wagon is like my home – I don’t have to worry about what to pack, I just take enough for a 20lb weight loss or gain, plus all my meds. I don’t have to leave on time or worry about the size of my backside causing dirty looks from disgruntled seat mates. Eight hours a day driving alone is no picnic, but I discovered the secret of long car trips – pick a really suspenseful audiobook. My favorites this trip; Falling Glass by Adrian McKinty; Raising Stoney Mayhall by Daryl Gregory which I found through Audible’s daily deals. (Check out my column about the wonders of Audible.com.)
Here are my road trip tips – highish and lower tech.
This is taken from the introduction of the Dementia Adventure’s guide to leading group adventures and visits to woodland areas for people with dementia. You can download the booklet or read it here.
The result of a partnership between the VisitWoods team at the Woodland Trust, Dementia Adventure CIC, and Tony Vale at Activity Team, this guide builds on the successful pilot project which Dementia Adventure led in 2011. This pilot was called “Wandering in the Woods”. The report, which outlines the physical, social and emotional beneﬁts of woodland visits for people living with dementia, along with the three supporting ﬁlms, is available at www.dementiaadventure.co.uk.
VisitWoods, Dementia Adventure and Activity Team shared a vision that it is possible for people living with dementia to safely and enjoyably beneﬁt from visiting woodland. The reality for many people living with dementia in care settings is that they often have little or no access to woodland. At the same time there are some extremely committed staff and family members who are successfully enabling small groups of residents to get out into nature. We all strongly felt that there are solutions and practical resources, which if collated and shared, would lead to more people living with dementia in care settings to beneﬁt from visiting woodland, as well as other natural spaces.
This enabling, informative and practical guide is aimed at older people and people living with dementia, who can often ﬁnd themselves excluded from participating in or enjoying activity out in woodland. This adaptable and engaging resource helps to:
• Provide inspiration and information to enjoy woodland activity
• Outline the beneﬁts of woodland activities
• Reduce the perceptions of barriers to accessing woodland
• Increase conﬁdence in accessing woodland by sharing solutions to common barriers
• Share resources to help group leaders to visit woods
• Provides inspiration and resources to help group leaders plan visits to other green space/natural settings
The guide is also available online and the authors welcome feedback, comments and other helpful resources which we can share to keep this work relevant and up to date.
I came across this blog post on the Whose Shoes? blog (a suggested read on personalization in health and social care, by the way). Neil Mapes is the director of Dementia Adventure, which is pretty close to one of my ideas for normalizing dementia in tourism and creating safe places for people with dementia to go with their families on vacations. It’s a good interview with him and about the importance of his company, Dementia Adventure. By the way, Neil, if you are looking for a new colleague, feel free to contact me…… 😉
Happy New Year everybody. #DementiaChallengers are on a roll for 2013, determined to speed up the pace of positive change for people living with dementia and their carers and improve quality of life. And what a refreshing start to the New Year we have here…!
This guest blog is from Neil Mapes, Director of the innovative and award-winning ‘Dementia Adventure’. I am delighted to be able to include this contribution to our ‘in my shoes’ series, looking at dementia from different perspectives. I am a big fan of Neil’s “can do” attitude – it takes a pretty special person to plan sailing holidays for people with dementia in our risk-averse, increasingly litigious ‘elf n’ safety’ society.
We have had over 70 guest posts so far. I have written a couple myself talking about the important role of nature and specifically the ‘Let nature feed your senses ‘ project. Neil’s team is making outdoor experiences a reality for more and more people. I personally feel you do not need mountains of research to know that getting outdoors is GOOD FOR US!
Dementia Adventure is a breath of fresh air for people living with dementia in all senses (literally) – touching, smelling, feeling, tasting and not least hearing the good things that nature has to offer. Most of us take these things for granted – I’d argue that being able to continue going outdoors in later life should be seen as a ‘human right’!
Dementia is an adventure, not a disease
I came across this post on the Changing Aging blog (a good read, by the way). I think it also expresses my thoughts that Alzheimer’s and other dementias are certainly an adventure. You don’t know what is around the next corner, you don’t know where it is going or what will happen along the way, in a very real way, the loved ones and caregivers are along for the ride.
But I don’t think it needs to be all sad and loss-related. There are some wonderful experiences interacting with someone with dementia. One of my favorite endearing qualities of people with dementia, is that they lose their ability to lie – so when they ask you who you are, they are genuinely interested in you in that moment, if they are excited about their favorite food, they will do a little ice cream dance. And these glimpses of genuine self-expression are the little golden nuggets that make me smile at the end of the day. I have a hard time expressing to people why I enjoy working with people with dementia so much (it was even harder when I was in my 20s), but if they haven’t done it, they can’t understand how rewarding it is to learn to see someone’s personality through all the dementia noise.
Many people think it is depressing to work with dementia, and I am hoping to challenge that stigma through my work and let people know that living with dementia, like anything in life, is a journey – an adventure. No, it will not always be pleasant, but it will not always be unpleasant, either. And much like other things in life, the adventure is richer when we share it with others!