YO U R G U I D E TO N AV I G AT I N G A DEMENTIA DIAGNOSIS
HELPFUL INFORMATION AND RESOURCES TO SUPPORT YOU We know that receiving a diagnosis of dementia or seeing warning signs and symptoms can be very scary for the person themselves, family members, and caregivers. While Alzheimer’s and dementia related diseases do not have a cure, there are many things that can potentially help the impact of the progression of the disease. Early diagnosis can help people to put new lifestyle choices into practice and will pave the way for making the appropriate plans for the future. We have created a resource guide to provide a foundation of information to help alleviate some of your questions and worries, and assist you in reaching out for help.
RECOGNIZING THE WARNING SIGNS OF DEMENTIA & ALZHEIMER’S DISEASE We all know that aging can cause wrinkles, gray hair, and achy joints. However, as we age our bodies and minds undergo many physiological changes that aren’t as obvious. As our brains age, their neurological makeup also changes, which can cause forgetfulness and delayed memory recall. While this is a normal part of aging, memory loss is not. However, many older adults suffer from long-term memory loss in their later years. In fact, according to the World Health Organization, 50 million people have dementia, with 10 million new diagnoses each year. Alzheimer’s disease is the most common form of dementia, contributing to 60-70% of all dementia cases.
DID YOU KNOW? Two-thirds of those diagnosed with Alzheimer’s or a dementia related disease are women. This is not just because on average women tend to live longer than men but because they may also be more biologically disposed. To raise awareness and research, the Alzheimer’s Association started My Brain Movement and have created the Women’s Alzheimer’s Research Initiative (WARI) to "directly advance clinical studies focused on women and Alzheimer’s disease and investigations led by female researchers."
SIGNS OF AGE-RELATED MEMORY LOSS: • Misplacing an item, such as keys or glasses • Forgetting to pay a bill on time • Missing doctor’s appointments • Repeating names or forgetting names • Forgetting to take medications on time • Missing meals from time to time If you or a loved one are witnessing any of the signs above, it may be time for you or a caregiver to intervene to ensure necessary tasks are completed on time. Keep in mind that as we age, it becomes increasingly difficult to take in, retain and learn new information.
SIGNS OF ALZHEIMER’S/DEMENTIA: While the symptoms of dementia and Alzheimer’s can differ, they also have commonalities. Here are a few of the most common warning signs seen in dementia and Alzheimer’s patients according to the Alzheimer’s Association and Healthline Magazine. Changes In Memory: Increasing difficulty with memory can be an early symptom of both dementia and Alzheimer’s. Most changes will involve short-term memory, such as forgetting where they placed an item, what they were going to do, or asking the same questions over and over again. Difficulty With Word Recall: Those with early symptoms might notice an increased difficulty in communicating their thoughts or needs. For most people with dementia and Alzheimer’s, vocabulary recall and organizing thoughts can get increasingly difficult as the disease progresses. Challenges In Problem-Solving: Working with numbers or developing a plan can also pose quite a challenge. Some people living with dementia have trouble following a recipe and keeping track of monthly bills. Changes In Mood And Behavior: While this symptom is certainly hard to recognize in yourself, it can be one of the first warning signs you notice in others. Depression and changes in personality, such as shifting from shy to outgoing, can also be related to dementia or Alzheimer’s. Confusion: In general, dementia and Alzheimer’s can be confusing experiences for those who have been diagnosed. Someone in the early stages of these diseases might become confused when they realize their memory has changed, making it difficult to interact and communicate with others. Repetition: Because Alzheimer’s and dementia affect memory, those who are living with it might find themselves repeating tasks and asking the same questions or telling the same stories. Struggle With Change: For those in the early stages, accepting the illness can be extremely difficult. It’s normal for those who have been diagnosed to experience periods of denial, making it difficult to adapt to change.
DIFFERENCES BETWEEN ALZHEIMER’S & DEMENTIA While they are commonly interchanged, dementia and Alzheimer’s are not the same diseases. Unlike Alzheimer’s, which is a specific long-term memory disease, dementia is a general term for a decline in mental ability severe enough to interfere with daily life. While many people are familiar with Alzheimer’s disease, the most common type of dementia, most are unfamiliar with the other various types. Many have similar symptoms which is why it can take longer to find a specific diagnosis. Of the 400 types of dementia, here are the most common aside from Alzheimer’s disease:
VASCULAR DEMENTIA This type of dementia can be caused when the vessels that supply blood to our brains get damaged. While there are far fewer cases of vascular dementia, it is the second most common type. Many diagnosed with this disease often notice challenges with problem-solving, focus and organization. LEWY BODY DEMENTIA Abnormal clumps of protein, called Lewy bodies, are found in the brains of people with certain diseases such as Lewy body dementia, Alzheimer’s, and Parkinson’s disease. Those with Lewy body might suffer from visual hallucinations, acting out and have trouble focusing. FRONTOTEMPORAL DEMENTIA The frontal and temporal lobes of the brain are associated with our personality, behavior, and language. When the nerve cells and their connections to the brain begin to degenerate, it’s not uncommon for behavior, personality, thinking, and judgment to begin to change. While there are different types of frontotemporal dementia, all of them are associated with nerve breakdown in the brain. MIXED DEMENTIA Adults can have many different types of dementia at one time. Researchers are performing autopsy studies to learn more about this condition and how it might be properly treated in the future. PARKINSON’S DISEASE A progressive nervous disorder disease that affects movement and affects speech. Nerves (neurons) in the brain break down or die and this creates tremors, stiffness, and the slowing down of movement. HUNTINGTON’S DISEASE This is an inherited disease, although rare, that affects nerve cells in the brain and as a result movement, cognitive, and psychiatric disorders emerge. It can affect speech, swallowing, and many types of cognitive disorders including difficulty organizing, lack of flexibility and difficulty learning new information. ALZHEIMER’S DISEASE Alzheimer’s refers to abnormal protein deposits that form in the brain causing plaques and tangles. These protein fragments and twisted fibers clog and damage the brain’s nerves, altering the chemical makeup of the brain. As the disease worsens, connections between brain cells can be completely lost, in addition to physical brain shrinkage. According to the National Institutes of Health, most adults begin experiencing symptoms of Alzheimer’s disease in their mid-60s.
GETTING DIAGNOSED If you feel the symptoms you or your loved one are experiencing could be dementia or Alzheimer’s now you need to get an official diagnosis. Be forewarned, this can take time as there is not one test that will confirm exactly what you have. You will possibly have to explore several options to find answers, especially if you or your loved one have a particularly rare form of dementia. Additionally, it can be common to have mixed dementias so a specific diagnosis can be far more difficult. Trying different methods for diagnosis and reaching out to the experts and support groups can all help in the path to finding answers.
GERIATRIC ASSESSMENT Also known as a CGA or comprehensive geriatric assessment — this is a multidimensional and multidisciplinary assessment of all aspects of your health from physical to cognitive. It includes an evaluation of all the things you use during day to day living including vision, hearing, and balance among others. Additionally, one can expect to receive treatment options, long-term care arrangements, caregiver responsibilities along with medical, functional, and psychological evaluations. NEUROCOGNITIVE TESTS These measure brain function in a non-invasive way. They can help detect dementia early on because they test subtle changes in attention, perception, and hand-eye skills. The most common assessments for dementia are the MMSE (Mini-Mental State Exam) and the Mini-Cog test. The MMSE asks a series of questions while the Mini-Cog asks the person to complete two tasks. BRAIN IMAGING While brain scans are not always able to detect deficits in the brain due to dementia, they are a noninvasive technique that could identify some abnormalities and may be worth pursuing. The disease does not show up on MRI or CAT scans. However, it can show up on the newest forms of positive emission tomography (PET) scans. By using radioactive tracers, a PET scan can highlight the protein amyloids. BLOOD TESTS Blood tests cannot actually detect Alzheimer’s or dementia; however, they are important because they will help rule out other medical issues and should be part of a geriatric assessment. *To find out more about medical tests, we recommend going to https://www.alz.org/alzheimers-dementia/diagnosis/medical_tests
According to the Alzheimer’s Association, “on average a person with Alzheimer’s lives four to eight years after diagnosis, but can live as long as 20 years, depending on other factors.” While the disease does progress with time, every case is different in regards to how long a person remains in each stage and some may linger between stages, making it harder to define what stage they are in.
EARLY Symptoms are mild and tend to be mostly characterized by types of forgetfulness. • Difficulty remembering names • Difficulty performing tasks in a social or work environment • Trouble managing money • Forgetting recent events • Wandering and becoming lost in familiar places
MIDDLE Symptoms become more frequent and additional support may be needed. • Forgetting events or personal history • Mood changes, withdrawn, especially in social situations • Memory recall; i.e., what school they attended or where they lived in childhood • Unclear or confused about what day it is • Need assistance deciding on what clothing to wear that is seasonally appropriate • Bladder and bowl control issues • Behavioral changes such as hand wringing, shredding paper, suspiciousness, and delusions • Changes in sleep patterns, such as sleeping during the day and being more active at night • “Sundowning” may occur, a particularly restless time of the day for people in this stage that occurs late in the afternoon and early evening
LATE STAGE (SEVERE) At this stage symptoms become so severe that individuals will need round the clock care. Communication may become non-existent and behavioral and personality changes may become severe and volatile. • Increased risk of infections, especially pneumonia • Difficulty communicating • Reduced or lost awareness of day to day events or recent activities and surroundings • Inability to walk, sit, and eventually swallow • Caregiving requirements needed full-time along with daily personal care
LIFE AFTER DIAGNOSIS — WHAT TO EXPECT? For some adults, getting a diagnosis can be a long process. Noticing symptoms, scheduling appointments and tests can be an emotional process. While each person is different, once you or your loved one finally receives a diagnosis, it’s not uncommon to experience a wide range of emotions, or even to feel numb. According to the Alzheimer’s Association, here are a few of the most common emotions people with a dementia diagnosis have experienced: Anger: A dementia diagnosis can change the plans your loved one had for their future. It’s not uncommon to feel angry after a diagnosis, especially when realizing the course of the disease cannot be controlled. Sense of Loss: Realizing the direction of their life is not what they had anticipated can cause them to grieve over the plans they have lost. Denial: It might take some time to process the diagnosis. It’s not uncommon to feel overwhelmed by the diagnosis. Relief: A diagnosis can validate concerns they had about the symptoms they have been experiencing. They might feel relieved to know the changes they experienced were due to an illness. Isolation: Their diagnosis might make them feel alone and different from those around them. Processing the diagnosis can take some time. However, as they accept their diagnosis, they might find new ways to move forward while cultivating a fulfilling future. As you work through the diagnosis with them, it's important to find ways to take care of them both emotionally and physically. Many communities have support groups for those diagnosed with dementia. This can be a wonderful opportunity to build a support system to help you and your loved one along your journey. While your loved one works through their emotions, they might be thinking about sharing the news of their diagnosis with family and friends.
Need additional help in understanding Alzheimer's? Take the FREE e-learning course with Alzheimer's Association here: https://training.alz.org/products/4053/understanding-alzheimers-and-dementia?
SHARING THE DEMENTIA DIAGNOSIS WITH FAMILY & FRIENDS It's completely normal for your loved one to be hesitant about sharing their diagnosis with friends and family. However, as the disease progresses, it’s important to have a support system in place before they even need it. Telling family and friends will allow them to build their support system early on and will enable them to face challenges more easily. Remember, they don’t have to tell everyone at one time. They have the ability to choose who they want to tell and how to tell them. Here are a few tips to help you and your loved one share the news when they're ready: • Think about who you and your loved one want to share your diagnosis with first. You might choose to tell those who they feel closest to or who they spend the most time with. • Choose those who they want to be supported by as the disease progresses. • Go slowly. Sharing the diagnosis can be emotional. You and your loved on aren’t obligated to talk about everything in one sitting. This can happen over time. • Take educational brochures with you to begin your conversation. This can be a great way to learn about the disease with those that will be supporting your loved one. • Let people support your loved one, but also be sure to tell them how your loved one wants to be supported. If they want to be supported in certain ways, like help with doctor’s appointments, grocery shopping, or cooking meals, it’s important to express this to friends and family.
CAUSES & TREATMENT Because there are so many different types of dementia, it is difficult to identify the exact cause and therefore treatments. Underlying health issues, environment, and family history can impact a person’s potential for developing dementia. Other disorders, such as Huntington’s disease, traumatic brain injury, and Parkinson’s disease, are also linked to dementia. This means the risk of developing dementia is significantly increased when one of these disorders has already developed. While there is currently no cure for dementia and Alzheimer’s disease, there are many ways to help slow the progression and minimize symptoms.
MEDICATIONS Your doctor will be your loved one's best guide for medications that may slow down memory loss and cognitive decline.
SUPPORT THERAPY Therapies such as speech or physical therapies may help people with aphasia (decline in speech and understanding) and movement disorders.
PSYCHOTHERAPY The diagnosis of dementia or Alzheimer’s is not only devastating news to the person diagnosed but also to the family. Speaking to a professional can help ease the anxiety of what lies ahead and assist you and your loved one with putting together a plan for coping with what is to come. LIFESTYLE Living a healthier lifestyle by exercising and eating foods that boost immunity and brain function will have positive effects on cognitive decline. COMMUNITY / ENVIRONMENT With the progression of the disease it may become more and more difficult for family alone to care for your loved one. This may be the time to consider a community that provides the assistance they need in order to keep them safe. Memory care units within senior living communities provide residents with ongoing engagement and the support of caregivers who are trained to work with people with dementias. MANAGEMENT OF SYMPTOMS Ongoing management of your disease as it changes and worsens is recommended. Each stage may bring new symptoms that need to be addressed. CLINICAL TRIALS There are clinical trials happening throughout the United States on a regular basis. These would be something to consider once all your loved one's other options for treatment have been ruled out or have proven to be unsuccessful.
GAIN AGING BRAIN POWER LIFESTYLE CHANGES THAT COULD MAKE A DIFFERENCE
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EAT WISELY: Maintaining a healthy diet will help lower your blood pressure and cholesterol, reduce obesity and diabetes, and improve circulation. A Mediterranean diet that is built primarily around vegetables, nuts, beans, and grains with minimal amount of animal-based proteins is not only heart healthy but brain healthy. ADD EXERCISE: Regardless of age, regular aerobic exercise is good for everyone. Begin slowly but add in some form of exercise at least three times a week. Walk with friends, take a yoga class, or dip into a pool. SOCIALIZE WITH OTHERS: Socialization is important for keeping us engaged. It not only helps with immune systems but also improves our mental and brain health. LEARN MORE: Use your brain and learn new things to keep it active. Pick up a new language or refresh one you know. BETTER SLEEP: Getting a good night’s sleep makes all the difference. Consistent poor sleep may contribute to cognitive decline. TREAT DEPRESSION: If you are suffering from depression, make sure you make an effort to get it treated effectively. This will make a difference to all the other lifestyle changes you can implement to make your life and health better.
HELPING YOUR LOVED ONE When someone is diagnosed with dementia, changes in their brain begin to make it difficult and often impossible for them to communicate in the same way prior to their diagnosis. In early stages this typically affects short term memory. Later, they may have difficulty speaking and word finding. They may even replace words in a sentence that don’t fit what they are trying to express. The one thing that doesn’t change is emotion and expression. People with dementia have something to say. This means that as caregivers and loved ones, we now need to step into their world and learn to communicate in new ways. Here are some tips to help you communicate as dementia progresses: Be Patient: A person with dementia is not forgetting on purpose or trying to frustrate you. Please be patient with them and remember it is not their fault. Redirect: Forgetting important information can be very scary or frustrating for someone with dementia. Redirection can be a tool that will relieve stress and open the door to new opportunities. The possibilities are endless but you might start by trying the following:
• Invite them to participate in a new activity or a hobby they have always enjoyed
• Ask questions related to a positive subject they like to discuss
• Enjoy some upbeat music
Step Into Their World: A person with dementia may not be able to tell dreams from reality or the past from the present. They may even experience hallucinations. It is important that we step into their world and don’t expect them to come back to ours. Find ways to go along with their story and ease their concerns. Fiblets: Stepping into their world can be aided by the use of “fiblets”. Most of us were taught to tell the truth, and in most circumstances in life, this a good policy. However, when speaking to people with dementia there are times when the truth can be detrimental. For example, they may not recall that a loved one has passed. Reminding them regularly may cause them unnecessary distress. Limit Information: Someone with dementia may fixate and become stressed about an upcoming event, such as an upcoming visit from a family member or an appointment. It is often best to share these event details at the last minute to avoid allowing fears or frustrations to set in. Learn Their “Language”: While there are many similarities among people with a dementia diagnosis, it is important to understand that each person may have a slightly different way of communicating. It is important to learn their “language” and how they are trying to communicate their needs and emotions. Even if a resident is non-verbal they still communicate through body language and expression. If we take the time to understand their “language” we can help to greatly improve their quality of life and provide them with important services and validation they so desperately need.
TIME TO STEP IN Because dementia and Alzheimer’s usually do not suddenly occur overnight, you can expect to have a bit of time to plan for the future. However, cognitive decline can suddenly emerge due to a stroke, brain injury and other medical conditions so it is always wise to have options ready ahead of time. Once you have a diagnosis, we would suggest beginning to get resources together and planning for the future as soon as possible. If your loved one is currently living in their own home, keep an eye out for these warning signs when visiting or alert other family members to do so. • How is their appearance? If they are normally well dressed and put together, has that started to change? • Is their home dirty or messier than normal? • Check their refrigerator – are items old, stale, or out of date? • Have monthly bills been paid? Check up on their latest bills and take a look at the mail. • Take a look at their car if they still drive. Are there any new dents? Or scrapes? • Double check appliances in case there may have been a fire or charred walls where an item was left unattended • Are they in touch with you as often as they used to be or have they missed appointments? • Are they neglecting to take care of plants and/or animals? • Has their doctor contacted you about concerns? • Have any of their friends contacted you with worries about their situation?
MAKE A PLAN Before the disease progresses, it’s crucial to make a financial plan for you and your loved one's future, especially if they are living alone. This might include anything from taking inventory of their existing legal documents to making legal plans for their finances and property. You might consider naming another person to make decisions on their behalf when they no longer can through a power of attorney. Put their wishes for medical treatment in a living will. In addition, it’s important to make estate plans through a standard will or living trust. Often it is a person’s financial adviser or the person in charge of finances that may even notice a shift in behavior before anyone else. According to AARP, “Daniel Marson, a neuropsychologist and director of the Alzheimer’s Disease Center at the University of Alabama in Birmingham, says warning signs include memory lapses about money, failure to pay bills or paying them more than once, and new difficulty comprehending money concepts.” If you haven’t already, it might be helpful to decide to have all bills to be paid automatically or set this up for your parent or spouse. This will eliminate any chance of falling behind. Also, you might consider setting up direct deposit for any checks that you receive consistently. Most importantly, talk to immediate family about plans. Include them in the decision-making process and ask for their help and suggestions. Take time to work on solutions that work for the immediate future and the long term.
IS IT TIME FOR SENIOR LIVING? Senior living communities have evolved significantly over recent years and residents are offered a wide range of activities, programs, dining options, and living arrangements to make life as normal as possible. Communities like this are especially good for people who have lost a spouse or do not have immediate family living nearby. Here one can be engaged and social right within the walls of the community. Most have specific memory care neighborhoods geared to take care of people with all levels of memory impairment from the early to end stages. Are You Prepared to be a Full Time Caregiver? While family caregivers have all the best intentions, being a full-time caregiver can become overwhelming very quickly and should not be taken lightly. We suggest asking yourself the following questions to guide you to your next decision. CAREGIVER READINESS QUESTIONS
YES
Am I physically able to provide the needed assistance? (Could I continue doing this work for weeks? Months? Years? Do I have physical limitations for the work involved?) Am I prepared to perform intimate caregiving chores like bathing and helping with toileting? Am I able to keep from getting upset and angry? (Am I able to stay calm and treat family members with patience and kindness even when I feel tired and overworked with the responsibilities of being a caregiver?) Can I free my schedule to be available when needed? Can I afford to reduce or stop working? (Do I need to continue to work to meet my family’s and my current or future financial needs?) Am I willing to reduce or neglect other obligations in order to give the care needed? If there are other people that depend on me (children, etc.), can I find alternative care for them to free up my time to take care of my loved one? Are you confident that other family relationships (e.g., with your spouse) will not be negatively effected by the unduly stress of caregiving? Do I have a list of contacts to ask for help when I need a break? (Am I willing to ask for help if I need it? How will I protect myself from getting so involved that I never take a break or get help?) Would I be willing to purchase care to supplement the care I can give? (Do I have the financial resources to purchase supplemental care? Would I be willing to pay someone to help me provide the care that is needed?) Do the people around me support me in my decision? (Are they willing to share in some of the responsibilities?) It is important to be honest with yourself and understand your limitations. If you answered “no” to 2 or more of these questions, it may be time to weigh alternative options to caregiving at home.
NO
As you look at assisted living and memory care communities there are many things to consider. Some clear signs that indicate a change is needed include a deterioration in health, inability to manage finances, unable to maintain personal care, and lack of socialization. If you do have someone who is willing to be a caregiver, that too needs to be thought through carefully.
THINGS TO CONSIDER WHEN LOOKING FOR AN ASSISTED LIVING RESIDENCE Once you have decided whether or not your love one will remain at home or if it is time to go to assisted living, there are some questions you need to ask while doing research on finding the right community for you and your family member.
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Ask to meet the team. How can a resident or family member get in contact with the management team? Do they have apartments available? What types/sizes of apartments do they offer? Do you bring your own furniture, or is it provided? Ask about the culinary program. Is the food prepared from scratch? Ask to see a menu. Schedule a time to have lunch or dinner. Are nurses available to the residents around the clock? Do they allow for visiting physicians or specialists? What type of training is provided for the staff? What does the interview/hiring process entail? What is the plan for on-going training?
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Do they have call lights or pendants to alert someone for help? How does the staff respond? Is transportation available at the community for physician appointments or outings? Is there an additional charge for this service? What accommodations are available if the resident’s needs change? Can your loved one age in place? What type of programming and cultural enrichment opportunities are available? Is it purposeful, engaging and dignified? Are there outings to museums, restaurants or other entertainment venues? Ask for the names of a few family members and residents that you could speak with about their experience with the community.
At Maplewood Senior Living, we hold special regard for residents with Alzheimer’s disease and memory impairment. We believe that while memory loss means living with certain challenges, it should not stand in the way of living a life of dignity. At Maplewood Senior Living, we embrace new technology such as iPads and Temi robots along with Rendever virtual reality and Eversound headphones to keep our seniors engaged with family and friends. Our program directors and memory care directors work hard to incorporate programs that engage and benefit residents at any level of care. Our highly trained and compassionate staff throughout all our communities help residents with memory impairment reduce stress and improve wellbeing by focusing on the joys and accomplishments that can be experienced today. Acknowledging the challenges that can come with memory loss, we strive for engagement and connection through an emotion-based philosophy of care we call HEART™, an acronym for Humor, Empathy, Autonomy, Respect and Reaching out to others, and Trust and Triumph. Our Touch of Heart™ Brain Fitness Center employs innovative technologies to exercise the brain, facilitate communication, reduce stress, and increase each resident’s potential to enjoy their day.
SEEKING ADDITIONAL HELP — RESOURCES: In addition to this guide, we encourage you to use other resources to help you through this process. Many provide support groups, share stories, offer links to the latest news, and provide more specific details for different types of dementias, services, and more.
www.aarp.org
www.aarp.org/money/investing/info-2015/ financial-services-for-memory-loss.html
www.alz.org
www.alzheimers.gov
www.uclahealth.org/dementia/
www.bluezones.com
www.caringkindnyc.org
National Institute on Aging www.nia.nih.gov
www.webmd.com
www.alzfdn.org
www.alzheimersdisease.net
www.mayoclinic.org
Mediterranean Diet Recipes
*Note: We have used many of the resources from these experts in dementia and Alzheimer's healthcare to write this guide.
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