Alzheimer’s and Down Syndrome

My friend’s son is a person with Down syndrome; he is in his late 30’s, manages the cart team at a grocery store, and lives in a group home. He is happy, self-sufficient, and resilient.  I think about him every time someone brings up his condition and I hope that others see the potential that people with his disorder can bring to both society and themselves.

I came across a statistic the other day – that more than 75% of those with Down syndrome aged 65 and older have Alzheimer’s.  That’s nearly six times the percentage of people in this age group who do not have Down syndrome. They are also more likely to develop early onset Alzheimer’s since they live, on average, 55-60 years.

Diagnosis of Alzheimer’s for people with Down syndrome can be challenging – people may exhibit noticeable behavior changes rather than forgetfulness or memory loss. Alzheimer’s research may have different implications for people with Down syndrome because of the genetic differences of people with and without it. Even medications are processed differently in the body.

It’s estimated that over 400,000 people in the U.S. have Down syndrome – approximately 1 in every 1,000 babies receive a diagnosis. Down syndrome is a chromosomal condition in which people are born with an extra copy of chromosome number 21. That one extra copy causes developmental delays and health issues, such as heart, bone, and muscle problems.

Down syndrome and Alzheimer’s aren’t going away, but we look forward to future research to find some relief in these life-changing conditions.  

Information retrieved from http://www.alz.org/dementia/downloads/topicsheet_downsyndrome.pdf; Accessed September 2014.

Image from: http://www.alz.org/dementia/down-syndrome-alzheimers-symptoms.asp

The Sound of Music

“…Do di di di do we do do…these are a few of my favorite things!” Ah, the Sound of Music – it is one of “My Favorite Things!” Music can match or change your mood, help express the way you feel, and trigger a memory and a moment in your life.

In Linda Noelker’s blog entry on Huffington Post, she reviews Alive Inside: A Story of Music and Memory, shown at the Cleveland International Film Festival this past March.

Noelker writes, “The compelling film by director Michael Rossato-Bennett portrays the power of music to engage and enliven these nursing home residents to the amazement of staff and family members. The idea was Dan Cohen's, a social worker who found a way to bring residents to life using an iPod with a personally customized playlist. Once the headset is on and the residents are listening to their favorite songs from the 1940s or 50s, their eyes open wide, smiles appear, and some even clap their hands or tap their feet.”

This movie is another example of the growing list of research on how music and the arts benefit people with Alzheimer’s. Watching the movie is an inexpensive activity to enjoy and a nice reminder of the power of music; as a caregiver, try using music to connect with your loved one. If your family member is in a home, you can try to advocate for a focus on music if it doesn’t already exist.

Is there a song that connects you and your elderly family member? Or, a song that they’ve been drawn to? What songs do you think will stick with you forever?

2013 Walk to End Alzheimer's Disease

Long Term Solutions recently participated in the Boston/Cambridge Walk to End Alzheimer’s! Our team walked six miles to increase awareness for Alzheimer’s disease and to raise money and support for Alzheimer’s research. Here is a photo of Team LTS before the walk. You can look at more pictures by visiting our Facebook page.

How Does WeCare+ Help?

Mr. Bob is an 85-year-old male who is the primary caregiver for his spouse Mrs. Bob. She was recently diagnosed with Alzheimer’s Disease. However, the disease began much earlier and progressed very quickly. Within three years he was spending his entire day caring for her. Mr. Bob does this with little or no help, as their children are all out of state and can only offer assistance during the holidays. Also, as with many Alzheimer’s and Dementia patients, most of their friends stopped coming around.

Fortunately, Mr. Bob’s financial advisor was knowledgeable about elder care issues, and he recommended WeCare+. That is where Long Term Solutions stepped in. After an initial in home assessment, Long Term Solutions clinician Sue called Mr. Bob. First, they addressed the activities of daily living. Could she dress herself? Was she able to use the toilet independently? What about independent activities – could she use the phone? These are the types of question Bobby Sue and Mr. Bob worked through. Next, they determined what adaptive equipment would help Mr. Bob properly care for Mrs. Bob. Finally, they discussed safety issues, such as wandering. Mrs. Bob had just started wandering, and recently had been turning on the stove. Sue had many suggestions, from a new lock on the door, GPS transmitting sneakers, to removing the knobs on the stove. They developed a plan to ensure the safety of Mrs. Bob, and then Sue focused on the well fare of Mr. Bob.

With the duties of primary caregiver entirely on the spouse, there is always concern for caregiver burden. Caregiver stress is a multi-dimensional issue, with physical, emotional and intellectual components. Frequently, caregivers don’t realize that caregiver burden and stress is even an issue. Mr. Bob admitted he was having a tough time dealing with the guilt about some of the feelings of anger and frustration he was experiencing while caring for Mrs. Bob.

There is a lot of fear and confusion involved, as there is so little known about the disease. There’s also a lot of confusion. Mr. Bob and his wife were always focused on nutrition, health, and exercise, so why did this disease had affect them? There’s a lot of anger. Mr. Bob sees studies about Alzheimer’s Disease, possible causes, possible treatments, but he knows none of them will help his wife. There’s also resentment. What happened to his freedom? They used to be so involved in their community, but now they spend their days together alone in the house.

Sue suggested that with this level of dementia Mr. Bob should consider 24 hour care. He was hesitant, so she suggested he would benefit from having a home health for aide at least 4-5 hours, 7 days a week. That way, the aide can foster a relationship and develop trust with Mrs. Bob, and Mr. Bob can decide whether or not he is comfortable with it. Either way, it would free up some time for him during the day.

Sue let Mr. Bob know that he was welcome to call her anytime with any new concerns, and she provided him with community resources for caregivers, like himself.

New Technology for Caregivers: Planning with Apps

Caregivers assume an incredible amount of responsibility and a majority of their responsibilities revolve around planning and keeping track of most, if not all, of their loved one’s care needs. Usually, this is in the form of tracking doctor’s appointments, managing their loved one’s medications, and keeping track of important documents.  Fortunately, with almost everyone using a smartphone, there are a lot of technologies out there that can help caregivers with this planning.

Keeping Track of Doctor’s Appointments:

It’s incredibly easy to lose those small business cards that doctor’s offices give out for appointments. This can be especially difficult for a caregiver trying to track multiple appointments with multiple physicians and specialists. Tracking all of the appointments in a day planner is an option, but remembering to bring the planner to every appointment can be difficult. However, planning applications, such as Google Calendar, can be a great asset. Appointments can be organized by color, so a certain specialist can be assigned a specific color. This calendar can be accessed from multiple platforms, and can be quickly pulled up while scheduling.

Managing Medications:

There are multiple medication management applications, and most app stores allow users to browse through screenshots and reviews before committing to one. There is a great application called RxmindMe Prescription. This is a perfect application for caregivers. The application allows caregivers to set up alerts on a daily, hourly, or weekly basis. The app allows caregivers to be as specific or as general as they want. For example, a caregiver could put in an alert that says “call mom to reminder her about heart medication,” or the reminder could be more specific and state “remind mom to take 15 mg of Doxycycline.”  The best part of this application is the “Prescriptions” feature. This allows caregivers to group specific medications in categories. For example, heart medication, could be broken down into Lasix and Advair. In addition to this, the caregivers can upload pictures of the pills and dosing instructions for each medication to ensure that they are providing their loved one with the correct medication.

General Caregiver Information:

Eldercare 911 is an app designed by Dr. Marion Somers who is a Geriatric Care Manager, and it’s an incredible asset to caregivers. This is an incredibly helpful app that is designed to provide caregivers with all of the information needed while in an eldercare crisis. There is information regarding what to do before the crisis occurs, at the hospital, while planning for discharge, post-hospital care and while in recovery at home. Under each one of these categories are several sub-categories with even more resources. For example, if a caregiver is preparing for the discharge of your loved one from the hospital, this app provides information on how to hire help for your home, dealing with feelings of being overwhelmed, understanding adaptive equipment and more.  It’s incredibly easy to navigate, and the amount of resources in this app is astounding.

Currently, all of these applications are free in the iTunes store. Caregivers may have to try a couple of applications before finding one that works for them, but, in the time that they will save in the long run, it’s worth adopting these technologies.

Elderly and Strength Training

Activity is incredibly important for the elderly. According to the CDC, if you are over 65, you should get at least 150 minutes a week of moderately intense aerobic activity and strength training at least two days a week.

Over the past few months, there has been more and more research highlighting the great health benefits seniors can gain from weight training.  In the most recent research, strength training was credited with preventing Alzheimer’s, dementia and cognitive decline. In addition to mental benefits, weight training can help seniors strengthen their bones, reduce their risk of falling, and contribute to heart health. Furthermore, according to the CDC, strength training has been credited with helping to reduce disease and symptoms of arthritis, diabetes, osteoporosis, obesity, back pain and depression.

For more information on strength training and exercise ideas, visit the links below:

CDC: Growing Stronger – Strength Training for Older Adults

About.com: Dumbbell Strength Training for Seniors

Berries Delay Memory Decline

Here’s another great reason to incorporate fruit into your diet: berries may delay memory decline. In a recent study, researchers found that consumption of berries slowed cognitive decline in women 70 or older. In some cases, the cognitive decline was slowed for up to 2.5 years.

Blueberries contain an extremely high amount of flavonoids. These flavonoids are able to cross the blood brain barrier into the hippocampus, which is that part of the brain that is responsible for forming memories and learning. Interestingly, many medications aren’t able to cross this blood brain barrier.

So, be sure to put blueberries on your shopping list this week! You can read the full report here.

Caregiving and the Importance of Getting Outside

Caregivers are constantly being bombarded with things they should and shouldn’t do to help process the incredible amount of stress involved with caregiving. One thing is frequently overlooked, and it is probably one of the easiest things to do: get outside!

The health benefits of sun exposure and fresh air are incredible. First, it’s important for caregivers because sunlight is a necessary part of the production of Vitamin D. Vitamin D has been credited with reducing the risk of cancer, increasing bone health, reducing the risk of developing osteoporosis, and it is associated with better moods and increased happiness.

Aside from the health benefits, going outside will give you an opportunity to take a break from caregiving. If you incorporate 15-30 minutes of alone time outside, you will see both mental health benefits as well as physical health benefits! As always, be sure to wear sunscreen while outside, and only moderate amounts of sun exposure is recommended!

Click here for a list of 25 health benefits of sun exposure.

Caregivers at LTS: Karen

“The greatest joy is watching him smile, when he smiles,” said Karen about her father-in-law. “I tell my husband – I just live for that.”

Laughter is one thing about caregiving that brings joy to Karen. Another is taking her father-in-law out to eat fried clams at Red Wing Diner just down the street from her house. The third is having conversations with him.

“He loves having conversation. He has a great sense of humor. If I can just banter back and forth, that makes him laugh. It makes it all worth it for me,” she explained.

Karen’s father-in-law lives with her and her husband in their split level home. They live in the top level and he lives in the bottom level. He has a family room, a living area, a bathroom and a small dinette in his make shift home.

“He’s got everything he needs down there,” explained Karen.

Karen and her husband are the two primary caregivers for her father-in-law, Harvey. He moved in after being diagnosed with vascular dementia and Alzheimer’s disease, and it took a lot to get her father to this point.

Harvey had been successfully living independently in his home since his wife’s death 13 years ago. He had been able to maintain his independence at home for so many years with the help of his eldest daughter. She did his grocery shopping, prepared his meals, did his laundry and helped him with housecleaning. However, his family started to notice a decline. He had memory lapses and frequently repeated the same story. He stopped changing his clothes and caring for his personal hygiene. Things he had been using for years, like the TV remote, became too complicated. The pedals in the car were too close together. He fell frequently and couldn’t help himself up without assistance. The warning signs were all there, and the family knew that he was no longer safe to live alone.

“There were so many indicators that something really needed to change, but that’s such a complicated thing,” she explained. “We knew it was going to end up taking an event to get him out of his home because he was so unwilling to do anything else.”

That event came in October 2011, when Harvey’s daughter found him on the floor of his home. He had suffered a stroke which put Harvey into a Boston area hospital for a week and into rehab for two more months. It was there he finally received an official diagnosis. A CT scan and an MRI revealed the tell-tale amyloid deposits that indicated Alzheimer’s disease, and he was given an additional diagnosis of vascular dementia.

Her spouse assumed the role of Power of Attorney and Health Care Proxy, and they began to transition her father-in-law into their home, despite objections from people who advocated for an assisted living facility or a nursing home. For Karen and her husband, it had been an easy decision. Before the dementia and Alzheimer’s disease had set in, the family had agreed to take her father-in-law into their home if he ever lost his ability to live independently. This was a conversation that her father-in-law had actively agreed too.

“Years ago my husband and I had offered to have Harvey come and live with us if the time ever came that he was no longer able to live alone. It became very evident to all of us that he could not go home by himself, and that he needed to come live with us,” she said.

Eventually, with help from the rehab employees and her family members, Harvey agreed to move in with them That’s where her work experience at Long Term Solutions became incredibly useful. Karen is a nurse care coordinator at LTS, so she works all day long helping families address the care needs of their loved ones.

“My experience at LTS helped me in so many ways,” she explained. “I knew exactly what needed to be done in order to have Harvey come live with us. I knew what equipment we needed, what adaptations would need to be made to provide safety in bathing and toileting, and I knew the questions to ask and where to find resources.”

She credits her colleagues at LTS with helping her find lists of local agencies to provide her with home health aides to help care for her father. They provided her with contact information and email addresses to multiple aides in the area.

“I was even able to find a geriatric nurse practitioner who would come to the house… the employees at LTS were so helpful,” she said.

Her husband went to work measuring assistive equipment, putting up grab bars, and making the downstairs as accessible as possible for her father-in-law. They had almost everything in place, when were told that Harvey didn’t have the appropriate diagnosis for insurance to cover a hospital bed.

“The care coordinators in rehab, a lot of times, they don’t know all of the answers. For instance, I was led to believe if the physical therapists ordered the hospital bed, it would be covered. I found out about a week before he was discharged that he didn’t have the diagnosis for that,” she said.

Another physical therapist suggested looking on Craigslist.

“Our daughter who I lovingly refer to as the ‘Craigslist Queen’ was able to locate a used hospital bed for us within 15 minutes,” she said laughing.

With the hospital bed in place, they were ready to bring Harvey home.

“That first day arriving at our house, Harvey was all smiles, and he was so glad to be with us. That lasted about 48 hours. He slept all night the first night. He was so pleased with his caregivers, the food, our dog, and he even liked our cat! I remember coming to work that first day after Harvey moved in saying how smooth the transition had been.It was amazing! However the next day I came to work singing ‘the party’s over’.”

Harvey was no longer so pleased. While experiencing sun-downing, he gets angry and lashes out at Karen’s husband. He can say many hurtful things about being kept a prisoner in his home. Harvey has moments of confusion and agitation, and he can feel lonely and fearful. He needs help with almost everything, toileting, changing his Depends, showering, and walking. His left foot was affected by his stroke, and the dementia and Alzheimer’s make it difficult for him to remember how to walk. Harvey rarely sleeps through the entire night, and Karen and her husband monitor him with a baby monitor. However, there are things he can do himself, and Karen is working hard to allow him the dignity of doing what he can do on his own.

Karen and her husband have two caregivers for 12 hours during the morning, and they manage caring for him at night. To avoid stress, Karen and her husband go on a date once a week. They make sure they have an aide for every Friday night. They take vacation when they need to. They just took a two week vacation in January, but it’s difficult for her husband to take time off.

There is still an amazing amount of stress involved, even with these breaks. It’s a combination of financial stress, selling her father-in-law’s house, family dynamics, and other things.

“These past three months since Harvey came to live with us have been filled with adjustments for him and for us. Harvey no longer talks about going home to his house, he feels safe with us. He seems to be more settled being in our home. My husband and I have learned so much. This journey, traveling deeper into the world of Alzheimer’s is full of the unknown, it’s dynamic. Just when we think we understand it, it changes. It’s full of fearful moments and joy-filled moments. Whatever it is, we are traveling the road together, supporting and loving one another. To provide care for him is a privilege we would never want to miss. My payment you may ask? It’s Harvey’s smile! ” she concluded.

Ideas for Caregiving: Incorporating Items from the Past

Recently, The Sun reported that the Bristol Royal Infirmary has created a ‘reminiscence’ room to treat patients with Alzheimer’s and dementia. This really got us thinking! This idea is a great way to address some of the anxieties that people with Alzheimer’s experience. Many of these anxieties arise from disparities between the environment they are currently in and the environment they last remember being in. A lot of the time, people with Alzheimer’s or other dementias lose more recent memories first, so they remember their youth more easily as the disease progresses.

Incorporating items from the past into the room doesn’t just soothe anxieties; it offers an opportunity for people with Alzheimer’s to talk about memories associated with those items. It can create an environment conducive to conversation, and let you learn a little bit more about your loved one.

We understand that it might be challenging to remodel a whole room or other living space, but if you are caring for someone with Alzheimer’s, please do try to bring an item or two into a designated space or room to make this concept workable. At the worst, it will be ignored, and at the best, it could let you know more about your loved one and provide some relief from anxiety.

You can read The Sun article by clicking here.

Alzheimer's Walk a Great Success

We are happy to report that the Alzheimer's Walks in both Walpole and Cambridge were both a huge success.  At both we met and spoke with many great people, and for the Walpole walk the Long Term Solutions team raised $2,535.  We want to spend out a special thanks to all the employees, friends, family, and canines who walked, donated, planned, and made the event possible.  The money will go to a great cause and the effort to end Alzheimer's took one collective step forward.

Alzheimer's Action Day

As part of World Alzheimer's Month, tomorrow, September 21st, is Alzheimer's Action Day.  To raise awareness for Alzheimer's and show solidarity for those afflicted with it, wear purple, make your Facebook page purple, or simply talk to someone else and start a dialogue about the disease.  To find out more, visit http://www.alz.org/wam/wam.asp#boxTwo

Long Term Solutions Walks to End Alzheimer's

This weekend, Long Term Solutions will be participating in the Alzheimer's Association's Walk to End Alzheimer's in Walpole on Saturday and in Cambridge on Sunday. Every day at Long Term Solutions we work with people who have seen and experienced the harsh effects of Alzheimer's Disease, and we are walking to raise money to aid the research that will one day lead to a cure.  As of now, we have raised over $2,000 and have 20 walkers on our team. If you wish to make a donation, please visit: http://tinyurl.com/6e33v7r  The days of the walks, we will be sponsoring a booth and we hope you can come by to say hi, chat about our company, or learn more about Alzheimer's. 

Living with Alzheimer's Without a Diagnosis

A new study recently found that of the 36 million people in the world who suffer from Alzheimer's and dementia, 28 million are living without a diagnosis.  Alzheimer's is a terrible disease, but it is one that can be detected in its early stages.  Like many diseases, when it is found at an early stage, doctors can prescribe medications and treatments that delay the memory loss and other harmful effects that accompany Alzheimer's.  So, no matter what your age, remember to see your doctor regularly and request a dementia or Alzheimer's screening. 

People with Alzheimer's Create Photography Exhibit

A cool and touching article about people with Alzheimer's creating a photography exhibit in Houston. Most of the artists decided to photograph an image that evoked a strong memory. http://tinyurl.com/3t5jhbv

Tennessee Women's Basketball Coach Pat Summitt Diagnosed with Early-Onset Alzheimer's

Pat Summitt, who has coached the Tennessee women's basketball team for the past 37 years, and who has been arguably the most influential woman in sports in the last two centuries, announced on Tuesday that she has been diagnosed with early-onset Alzheimer's disease.  This news came as a shock to the sports community, for throughout her career Summitt has established herself as a personification of strength, toughness, and unflappibility.  The fact that Summitt could develop the disease seems unfathomable.  Yet this is the nature of Alzheimer's - it can hit anyone, no matter how strong the person's character, personality, nature, anything.  It does not discriminate and it hits hard, often effecting the person's family just as much as the person.  Pat Summitt will certainly have a tough road ahead as the disease sets in, and here at Long Term Solutions we all wish her the very best.     

LTS Participating in Alzheimer's Association Walks

At Long Term Solutions, every day we see first-hand the damage Alzheimer's disease causes, both to the individuals who suffer from it and their families. We have decided to participate in two Alzheimer's Association Walks to raise money that will go toward advances in research to treat and prevent Alzheimer's, and provide programs to improve the lives of millions of Americans.  The first is in Walpole on September 24th, and the second is in Cambridge on September 25th.  If you would like to help us in the fight to find a cure for Alzheimer's, please donate to the LTS team page at http://alzwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=456812&lis=0&kntae456812=8CF8D3BF3153486DA5D3797387DAAD82&supId=0&team=4218722&cj=
Thank you.

Seven Ways to Fight Alzheimer's

A new study suggests that there are seven risk factors that one can prevent in order to avoid Alzheimer's. The study found that you could reduce proneness to Alzheimer's by quitting smoking, increasing mental and physical exercise, controlling blood pressure and diabetes, and managing blood pressure and obesity. The article: http://www.msnbc.msn.com/id/43​854005/ns/health-aging/

Alzheimer's Experts Ask for More Funding from the U.S. Government

Alzheimer's experts have seen the difficulties that the disease causes, and they feel that the government is not providing enough funding for research on the disease, especially as the population ages and more Americans are at risk for it.  In this article, Reuters discusses the fight against Alzheimer's: http://www.reuters.com/article/2011/06/23/us-alzheimers-hearing-idUSTRE75M88M20110623?feedType=RSS&feedName=healthNews&WT.tsrc=Social+Media&WT.z_smid=twtr-reuters_health&WT.z_smid_dest=Twitter

Maria Shriver

Maria Shriver, former First Lady of California, and daughter and caregiver of the late Sargent Shriver, talks candidly about the difficulties caregivers face and discusses tips for them and how the country as a whole can address this growing problem.

Maria Shriver discusses caregiving on ABC News.