News & Events
Finding Happiness (not heartbreak) Among the Demented
By Susan Stewart
In a recent article (March 2018 issue of Harper’s Magazine) about caring for people with dementia, author and visiting nurse Sally Tisdale delves into the day-to-day world of real people suffering from the various myriad forms of brain disease. Offering us a rare glimpse of the highly individualized (and often mysterious) responses to their demented condition, Tisdale finds “… a world that is far more nuanced than the commentary surrounding it: there is grace here, rare intimacy, moments of startling clarity—and yes, happiness.”
“The stark fact is that dementia is incurable, progressive, and fatal, but … in the company of the demented, one finds peace and unquestioned love in at least as much measure as in the rest of the world,” she continues.
Where others see only loss and embarrassment and tragedy, “I see the riches: the brave, vulnerable, completely human work of figuring things out,” Tisdale explains. “People with dementia sometimes have a rare entrancement with their surroundings, a simplicity of perception, a sense of wonder.”
“The communal response to dementia seems to invite only existential despair,” she says. “Yet people with Alzheimer’s consistently rate their quality of life higher than their family members do. … people with cognitive impairments were no less happy than healthy people.”
Please read Tisdale’s piece in its entirety at https://harpers.org/archive/2018/03/out-of-time and hear the joy it offers to those affected and those who care for them. I think you’ll agree with her when she concludes: “What a wonder it all is, that we appear and abide and fade away and no one knows what follows.”
Celebrating Our Differences! Racial and Cultural Diversity in Memory Care communities
By Susan Stewart
As we celebrate Martin Luther King Jr. Day during the month of January, we are reminded of the long way we have come and the long road still ahead in achieving the kind of equality Dr. King dreamed of. A cursory glance at Memory Care communities across the nation tells us that while Alzheimer’s Disease does not discriminate along racial lines, the populations living in these communities remain predominantly white.
A Center for Disease Control (CDC) survey found that 91 percent of those living in Assisted Living Communities (and Memory Care is a specialized type of Assisted Living) were Caucasian. That’s a disproportionate number compared to the general population. As our aging population increases, it will be important to finds ways to mitigate this disparity, and ensure that all Americans have access to quality memory care. This is especially important as current research reveals that minorities may be at greater risk for developing dementia.
“As the population of the U.S. ages and becomes more diverse, the burden of dementia may be falling disproportionately on elderly minorities, both in terms of prevalence and severity.” (from The Impact of Ethnoracial Differences in Alzheimer’s Disease by Chin, Negash, and Hamilton)
The authors of the above study admit that the reasons for this are unclear but could include the following: That sometimes both diagnosis and treatment are delayed for minority populations due to social and cultural factors, beliefs about normal versus abnormal aging, lack of adequate access to medical care, and issues of trust between them and the medical establishment.
“I think the biggest piece of the puzzle for some African Americans and some Hispanics comes down to finances,” says Debra Carter of the National Caucus & Center on Black Aging. The entry fee alone can be prohibitive for many minority families, she says, let alone the often pricey monthly fee.
But economics alone does not explain it. Andrea Doherty, a Massachusetts-based senior living expert suggests that it might be as simple as geography. Many assisted living and memory care communities are being built in regions where most people (predominantly white) can support the monthly price tag of placing a loved one, as opposed to lower income inner cities (where a higher percentage of minorities live).
Perhaps the best place to focus our attention, both as professionals in the memory care industry and as consumers, is on each individual community’s ability to welcome and accommodate the wide variety of cultures, colors, and ethnicities growing old in America.
At Sydney Creek, residents reflect the larger community of San Luis Obispo, which is predominantly Caucasian. In the coming years, that demographic will change. Life Enrichment staff are well trained to be inclusive and welcoming to all colors and backgrounds. Recent surveys confirm that Memory Care as an industry is aware of the need to address its increasingly diverse residents, and is working hard across the board to ensure that its staff and communities can meet their differing social and cultural needs. # # #
Thomas Fire Prompts Needed Evacuation and Disaster Preparedness Plans
They are just so unpredictable. Natural disasters come at us out of nowhere, often with very little warning. Recently, 27 residents from Oak Cottage of Santa Barbara, a secured residential memory care community, arrived with caregivers, family, and staff members by bus and car to The Village at Sydney Creek Memory Care in San Luis Obispo. All were evacuees from the Thomas Fire who require specialized care; they arrived with medications, emergency documents, clothing, even a pet cat in a basket.
Mobilizing every member of her staff, Sydney Creek Administrator Kellie Gallegly, was notified in time to coordinate with Long-Term Care Ombudsman Karen Jones who arranged to have enough cots for the emergency arrivals.
“Our Director of Wellness, Kahlua Sievert, was the first to receive the call for help,” said Gallegly. “She notified staff members, including Medical Advisor Dr. Kevin Parzych and his wife. Since then, the team effort has been incredible; not one person has complained about the extra hours; it has been a very smooth process.”
As this blog post is being written it is unclear how long the evacuees will be staying at Sydney Creek but it might be as long as a week or even a month. “The whole community has stepped up to help,” said Gallegly, crediting SLO Health and Fire Departments among many others, for their support. Even nearby hotels offered reduced rates for family members.
All of which is a jarring reminder of the value of being prepared. Many seniors do not live in well-run communities. And some have discovered the hard way that having an emergency plan in place for evacuation is important—even life-saving. So a group of smart seniors living in Rochester, New York, wrote a comprehensive handbook called Disaster Preparedness for Seniors by Seniors. This comprehensive and immensely valuable 20-page booklet can be found (and printed out) at the www.redcross.org. Here are some highlights:
Three Steps to Preparedness: 1. Get a Kit
- Make a Plan
- Be Informed
- The Kit: The disaster supplies kit should be packed and ready, and stored in one place where everyone knows where to find it. It should have enough supplies (food, water, batteries and the like) to last at least three days. Complete list found on the site. For extra ease, the kit could be a container that has wheels. And please, label everything – especially walkers, wheelchairs, canes, etc. Don’t forget to include important documents (copies will do), like your medications and allergies list, deed to house, birth certificates, insurance policies, etc.
- The Plan: Meet with friends, family, and neighbors to construct a plan that everyone agrees to. Arrange for someone to check you on at the time of a disaster. Think about what personal disabilities or limitations that might affect your response to a disaster. Practice the planned actions regularly to make sure it works–the site suggests every six months. You may want to choose an out-of-town contact person as well. Include such things as escape routes and meeting places, a copy of your community’s evacuation procedures, and a review of the safe places within your home in case you are told to shelter in place.
- The Information: Post emergency phone numbers at every phone in your house. Plan for your pets and service animals, and be aware they are not allowed in emergency public shelters for health reasons. Consider where to keep vital family records, hearing aids, and other assistive devices so that they will be less likely to be damaged during an earthquake or flood. Think about the kinds of hazards that could threaten your neck of the woods, both natural and human-caused. Find out how your community warning system works. And know how to reach your local Neighborhood Emergency Team, CERT (Community Emergency Response Team), or community block association.
These three steps are by no means exhaustive so please visit the Red Cross website for the complete handbook. It’s the best gift you can give yourself and those you love this season, because whether it’s fire, flood, or a tragic train derailment – there’s no predicting them. But we CAN prepare for them. # # #
Putting the “Happy” back into Holidays
… Celebrating the season with loved ones who have dementia
By Susan Stewart
Just last week, I wrote an article about the importance of including our elders in our seasonal celebrations, and ways to make sure they are not forgotten in the holiday rush. I was heartened to find that many of the researchers emphasized that special care should be taken with loved ones who suffer from Alzheimer’s Disease and the other dementias. The best advice I found was the following piece from the Alzheimer’s Association (https://www.alz.org/care/alzheimers-dementia-holidays.asp) which contains excellent ideas and resources for support. Enjoy!
(article start) The holidays are a time when family and friends often come together. But for families living with Alzheimer’s and other dementias, the holidays can be challenging. Take a deep breath. With some planning and adjusted expectations, your celebrations can still be happy, memorable occasions.
Check in with the person with dementia
In the early stage, a person with Alzheimer’s may experience minor changes. Some may withdraw and be less comfortable socializing while others may relish seeing family and friends as before. The key is to check in with each other and discuss options. A simple “How are you doing” or “How are you coping with everything?” may be appreciated. Plan the holidays together, focusing on the things that bring happiness and letting go of activities that seem overwhelming or stressful.
For people in the middle or late stages, consider rethinking holiday plans. Everyone is unique and finding a plan that works can involve trial and error.
Familiarize others with the situation
The holidays are full of emotions, so it can help to let guests know what to expect before they arrive.
If the person is in the early stages of Alzheimer’s, relatives and friends might not notice any changes. But the person with dementia may have trouble following conversation or tend to repeat him- or herself. Family can help with communication by being patient, not interrupting or correcting, and giving the person time to finish his or her thoughts.
If the person is in the middle or late stages of Alzheimer’s, there may be significant changes in cognitive abilities since the last time an out-of-town friend or relative has visited. These changes can be hard to accept. Make sure visitors understand that changes in behavior and memory are caused by the disease and not the person.
You may find this easier to share changes in a letter or email that can be sent to multiple recipients. Here are some examples:
“I’m writing to let you know how things are going at our house. While we’re looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive.
“You may notice that ___ has changed since you last saw him/her. Among the changes you may notice are ___.
“I’ve enclosed a picture so you know how ___ looks now. Because ___ sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable.
“Please understand that ___ may not remember who you are and may confuse you with someone else. Please don’t feel offended by this. He/she appreciates your being with us and so do we.”
“Please treat ___ as you would any person. A warm smile and a gentle touch on ___’s shoulder or hand will be appreciated more than you know.”
“We would ask that you call when you’re nearby so we can prepare for your arrival. With your help and support, we can create a holiday memory that we’ll all treasure.”
For more ideas on how to let others know about changes in your loved one, join ALZConnected, our online support community where caregivers like you share tips on what has worked for them.
- The stress of caregiving responsibilities layered with holiday traditions can take a toll.Call a face-to-face meeting or arrange for a group discussion via telephone, video chat or email for family and friends to discuss holiday celebrations. Make sure that everyone understands your caregiving situation and has realistic expectations about what you can and cannot do. No one should expect you to maintain every holiday tradition or event.
- Be good to yourself.
Give yourself permission to do only what you can reasonably manage. If you’ve always invited 15 to 20 people to your home, consider paring it down to a few guests for a simple meal. Let others contribute. Have a potluck dinner or ask them to host at their home. You also may want to consider breaking large gatherings up into smaller visits of two or three people at a time to keep the person with Alzheimer’s and yourself from getting overtired.
- Do a variation on a theme.
If evening confusion and agitation are a problem, consider changing a holiday dinner into a holiday lunch or brunch. If you do keep the celebration at night, keep the room well-lit and try to avoid any known triggers.
Involve the person with dementia
- Build on past traditions and memories.
Focus on activities that are meaningful to the person with dementia. Your family member may find comfort in singing old holiday songs, watching favorite holiday movies, or looking through old photo albums.
- Involve the person in holiday preparation.
As the person’s abilities allow, invite him or her to help you prepare food, wrap packages, help decorate or set the table. This could be as simple as having the person measure an ingredient or hand decorations to you as you put them up. (Be careful with decoration choices. Blinking lights may confuse or scare a person with dementia, and decorations that look like food could be mistaken as edible.)
- Maintain a normal routine.
Sticking to the person’s normal routine will help keep the holidays from becoming disruptive or confusing. Plan time for breaks and rest.
Adapt gift giving
Arrange for respite care so you can enjoy a movie or lunch with a friend.
- Encourage safe and useful gifts for the person with dementia.
Diminishing capacity may make some gifts unusable or even dangerous to a person with dementia. If someone asks for gift ideas, suggest items the person with dementia needs or can easily enjoy. Ideas include: an identification bracelet (available through MedicAlert® + Alzheimer’s Association Safe Return®), comfortable clothing, favorite foods and photo albums.
- Put respite care on your wish list.
If friends or family ask what you want for a gift, suggest a gift certificate or something that will help you take care of yourself as you care for your loved one. This could be a cleaning or household chore service, an offer to provide respite care, or something that provides you with a bit of rest and relaxation.
When the person lives in a care facility
A holiday is still a holiday whether it is celebrated at home or at a care facility. Here are some ways to celebrate together:
- Consider joining your loved one in any facility-planned holiday activities
- Bring a favorite holiday food to share
- Sing holiday songs and ask if other residents can join in
- Read a favorite holiday story or poem out loud (article end)
So deck the halls, walk in a winter wonderland, and raise of cup of kindness often. Your holidays will be happier for it. # # #
The Village at Sydney Creek is pleased to announce our new venture for 2018. We are currently in the process of opening an adult day program to complement our state of the art memory care community. We are very excited for the opportunity to further serve the San Luis Obispo community affected by Alzheimer’s disease and related dementias.
I recently came across the article below from the Lewy Body Disease Association. Lewy Body Disease (LBD) is a form of dementia that we are seeing more of these days. I believe in most part due to medical advancements made in diagnostics. I hope you enjoy the article and if you have any questions please feel free to contact me at Sydney Creek. Kellie Gallegly, Executive Director
Caring for a person with dementia can be a very stressful job
Many caregivers are not using important community resources that can make their job easier and help them maintain both their health and emotional well-being. In fact, only 21 percent of LBD caregivers report using Adult Day Services (ADS). New research into the benefits of ADS may lead more dementia caregivers to consider it.
Researchers, led by Steven H. Zarit, PhD of Pennsylvania State University, extensively interviewed 173 family caregivers of individuals with dementia for 8 consecutive days. On some of those days, the individual with dementia attended ADS and on others the caregiver provided the bulk of the care. The research analyzed the caregivers’ experiences with stress and changes in mood and health, and compared their scores on days their relative attended ADS and days they provided most or all of the care.
Researchers identified behavior and psychological symptoms in the person with dementia as care-related stressors. These are reported by caregivers as the most challenging and upsetting aspects of caregiving. Stressors not related to caregiving were also measured, such as finances, arguments with other people and work-related events.
Positive experiences included sharing a good laugh with someone, a positive experience at work, with a friend or relative or at home. Caregiver mood was also measured during the same time, such as anger, anxiety, depression and positive emotions. Daily health symptoms such as pain, fatigue, gastrointestinal symptoms were also assessed.
On the days using adult day services caregivers had fewer care-related stressors and reported more positive experiences. As caregivers engage in more non-care activities during those days, non-care stressors were higher when the individual with dementia was in ADS. Interestingly, non-care stressors were largely work-related but were also accompanied by more positive experiences as well. This suggests that work may provide an enjoyable outlet for some caregivers.
Caregivers experienced a reduction in their own anger on ADS days. ADS use also had a protective effect on caregivers’ depression. On days when stressors were higher than normal, caregivers’ depression scores were elevated if they were home with their relative, but did not increase if their relative was attended ADS. While anger was lower on ADS days, health symptoms were more frequent.
This may be a result of caregivers having more time to focus on themselves and be more in tune with minor health symptoms they might otherwise ignore.
Long term exposure to stress has negative effects on caregivers’ emotional and physical well-being
Providing caregivers with frequent relief from daily stressors may enable them to more effectively manage stressors when they do arise. This may provide some protection against the effects of chronic stress associated with caregiving. Prior studies have also found that emotional reactivity to stressors is associated with increased risk of illness. The findings of decreased anger and depression suggest that ADS use may lower caregivers’ risk of illness.
The use of ADS benefits both the caregiver and person with dementia. Research indicates people with dementia who use ADS programs show improvements in behavior, mood and sleep. For some ADS may be a helpful non-pharmacological treatment for behavior and mood in dementia.
This study was funded by the National Institute on Aging and was published in The Gerontologist in June, 2013.
Steven H. Zarit. The Effects of Adult Day Services on Family Caregivers’ Daily Stress, Affect, and Health: Outcomes From the Daily Stress and Health (DaSH) Study. The Gerontologist. June, 2013. Available at: http://www.ncbi.nlm.nih.gov/pubmed/23690056. Accessed August 5, 2013.
The Alzheimer’s Association’s annual event, Walk to End Alzheimer’s, will be held in multiple locations throughout the Central Coast and surrounding areas.
- San Luis Obispo: October 28, 2017
- Santa Maria: September 30, 2017
- Santa Barbara: October 28, 2017
- Bakersfield: October 21, 2017
- Visalia: October 14, 2017
To learn more about the event or to register, please visit https://act.alz.org/site/SPageServer?pagename=walk_homepage
Meet with one of our Community Relations Coordinators, request more information or schedule a tour.
Caring for a loved one with Dementia or Alzheimer's is emotionally challenging—as is the decision to move them to a Memory Care facility. The Village at Sydney Creek is here to assist you with this transition. Our community in San Luis Obispo, California provides a knowledgeable staff and the necessary resources to make this step as smooth as possible—logistically, mentally, and emotionally.
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