<h2>The challenging role of care for dementia patients</h2>Most of us know at least one person in daily life – maybe a friend, neighbor, or co-worker – who has been touched by Alzheimer's disease or related dementia. Indeed, a 2023 <a href="https://www.seniorly.com/resource-center/seniorly-news/the-dementia-crisis-a-state-by-state-look-at-dementia" target="_blank" rel="noopener noreferrer">Seniorly study</a> on dementia reports that the number of Americans with dementia is expected to more than double by 2060, making the issue of Alzheimer's and dementia care even more important than it is today.<h2>What causes dementia, anyway?</h2><a href="https://www.alz.org/alzheimers-dementia/what-is-dementia" target="_blank" rel="noopener noreferrer">Dementia is caused by abnormal brain changes that </a>hinder communication with other brain cells. This can cause memory loss and problems with thought processes, the decision making process, emotions, and social abilities, as well as personality and behavior changes. Alzheimer’s disease is the most common form found in older adults who suffer from this disorder and according to the Alzheimer's Association, accounts for up to <a href="https://www.alz.org/alzheimers-dementia/what-is-alzheimers#:~:text=Alzheimer's%20is%20the%20most%20common,%2D80%25%20of%20dementia%20cases." target="_blank" rel="noopener noreferrer">80% of dementia</a> diagnoses. As a person with dementia progresses, the individual becomes more dependent on others for assistance with daily activities, such as dressing and eating.<h2>As dementia progresses, care options may change</h2>If you have a family member who has received a dementia diagnosis, you may already be aware of the statistics and description – and they’re sure to hit close to home. More there are more than<a href="https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf" target="_blank" rel="noopener noreferrer"> 11 million Americans are unpaid caregivers</a> for a friend or family member with dementia. So if you've had a day (or days) where you feel like you're alone - you're definitely not.There are a lot of unique challenges in caring for a loved one's dementia – and it can seem daunting at times. Over the course of the disease, people with dementia tend to need care around the clock as they become unable to properly self care for for themselves. When abilities have declined to this point, patients with demential will often move to a memory care community or nursing home where their needs can be met 24/7. For others, the cost of doing so may be prohibitive, or family members may simply opt to keep their loved one at home where everything is familiar.For those in the early stages of dementia, hiring a professional in-home caregiver can be a good compromise. It’s more cost-effective than memory care and it can relieve some of the stress and pressures that dementia care puts on family and friends.&nbsp;Outside caregivers typically help with everyday tasks and <a href="https://www.seniorly.com/what-are-activities-of-daily-living-adls" target="_blank" rel="noopener noreferrer">activities of daily living (ADLs)</a>. These personal activities can include bathing, dressing, grooming, feeding, walking or moving about, transferring from bed to chair, toileting, and managing incontinence. The caregiver may also help out with<a href="https://www.ncbi.nlm.nih.gov/books/NBK553126/#:~:text=The%20major%20domains%20of%20IADLs,for%20assistance%20and%20cognitive%20function." target="_blank" rel="noopener noreferrer"> instrumental activities of daily living</a> (IADLs). The IADLs can range from household chores and preparing meals, to shopping, arranging for medical appointments, providing transportation, managing finances and legal affairs, and answering the telephone.<h3>Options for in-home dementia care:</h3><ul><li>A paid caregiver may actually live onsite to help with personal care and everyday tasks, and be available at all times of the day or night.</li><li>A paid caregiver might come in only at night, allowing the other family members and caregiver to sleep without interruption.</li><li>A paid caregiver might spend the day at your home – especially if the primary caregiver works outside the home during the day, or they may stop in once or twice a day to help with one or more ADLs.</li></ul>Whether you choose to be the sole full-time caregiver or hire someone to help out, there are things you can do to help make dementia care easier for both you and your care recipient.<h2>A dementia care framework for the caregiver journey</h2>Dementia is a progressive disease, meaning that the needs of the dementia patient will change over time. The abilities and resilience of family caregivers are also likely to change, as they learn new skills and perhaps find themselves increasingly challenged with each new stage of the disease.It's important to create a framework for assessing how both parties are doing over time and to course. correct as needed.&nbsp;Here are the 6 things to regularly revisit over the course of your caregiver journey:<ol><li>Information. Knowledge is power, and one of the best long-term strategies in caring for people with dementia is to become well informed about the disease and its progression. While Seniorly has created a great <a href="https://www.seniorly.com/memory-care" target="_blank" rel="noopener noreferrer">Definitive Guide</a> for memory care, the Family Caregiver Alliance also hosts an incredible <a href="https://www.caregiver.org/caregiver-resources/health-conditions/dementia/?via=caregiver-resources,health-conditions" target="_blank" rel="noopener noreferrer">library of videos and webinars</a> on caring for people with dementia, from bathing to dental care to making it through the holidays. The<a href="https://www.nia.nih.gov/health/alzheimers-disease-fact-sheet" target="_blank" rel="noopener noreferrer"> National Institute On Aging</a> also provides Alzheimer’s and dementia-related information for patients, families, and caregivers.</li><li>Home safety. If you decide that the bulk of care will be provided in the home, it's time to address any home safety concerns that the environment may pose. Consider adding safety features such as a sturdy shower chair, grab bars in the bathroom, night lights, smoke detectors, CO2 detectors, or removing locks from doors so people with dementia don’t lock themselves in or out. There are many non-invasive options such as<a href="https://www.seniorly.com/resource-center/health-and-lifestyle/how-smart-home-tech-can-help-seniors" target="_blank" rel="noopener noreferrer"> smart security systems</a> that have security cameras and door-locking options right from smartphones. The security of the cameras can give seniors peace of mind about their safety and well-being when living with<a href="https://www.mayoclinic.org/diseases-conditions/mild-cognitive-impairment/symptoms-causes/syc-20354578#:~:text=Mild%20cognitive%20impairment%20(MCI)%20is,mental%20function%20has%20%22slipped.%22" target="_blank" rel="noopener noreferrer"> mild cognitive impairment</a> (MCI) or the very early stages of dementia. The National Institute on Aging also has a great home safety features <a href="https://www.nia.nih.gov/health/home-safety-checklist-alzheimers-disease#:~:text=Put%20all%20portable%20and%20cell,volatile%20compounds%20near%20gas%20appliances." target="_blank" rel="noopener noreferrer">checklist</a> that you can use to evaluate safety concerns.</li><li>Caregiver roles. The role of primary caregiver is a tough one, and even the best of us will want and need help. Think about ways to mitigate the risk of long-term burnout, such as engaging adult day care centers to regularly to provide socialization and stimulation for the person with dementia and a bit of a break for the primary caregiver. You can also consider ways to engage friends, family or professional caregivers to provide regular and reliable support. For example, how do you want to manage major health care decisions? Should you have a rotating schedule for care? Who will manage communication with the senior's medical team? It's helpful to ensure that everyone clearly understands the limits of what you can - and cannot do.</li><li>Care options. While care at home in the early stages of dementia may be feasible, you may still want to engage paid support from time to time, and the Family Caregiver Alliance is a great place to <a href="https://www.caregiver.org/" target="_blank" rel="noopener noreferrer">research the options</a> in your area. As the disease progresses, managing troubling behavior or complex health care for people with dementia in a home setting simply may not be the right solution. Part of the caregiving journey will invariably include consideration of a long term care facility. If you think it might be time to find long-term care, there are resources to turn to for help in finding<a href="https://www.seniorly.com/skilled-nursing-facility" target="_blank" rel="noopener noreferrer"> skilled nursing facilities</a> or<a href="https://www.seniorly.com/assisted-living" target="_blank" rel="noopener noreferrer"> assisted living communities</a> near you. Many caregivers report that memory care communities actually provide a higher level of health care than was being delivered at home, and a surprising number of caregivers share that they also benefitted from a return to their previous relationship dynamic.</li><li>Self-care strategy. Caring for people with dementia can be very exhausting and it's important to take some time for yourself to relax and recharge or it can take a toll on your own physical and mental health. Ask a friend or family member to help out once in a while so you get some important relief, join one of the many support groups available, or consider<a href="https://www.seniorly.com/respite-care" target="_blank" rel="noopener noreferrer"> respite care</a>. Whether directly providing care or managing care indirectly, family caregivers play and crucial role and their well-being is often overlooked.</li><li>Communication strategy. As the primary caregiver for your loved one, you will also undoubtedly assume the role of primary communicator, so your communication skills are going to be tested. Whether it be communicating with your care recipient, their medical team or just family members, how, what and when you communicate will be important. Think about starting a <a href="https://www.nia.nih.gov/health/home-safety-checklist-alzheimers-disease#:~:text=Cover%20unused%20electrical%20outlets%20with,and%20the%20bottom%20of%20stairs." target="_blank" rel="noopener noreferrer">dementia journal</a> to help you track changes in a person's personality and ability over time, and manage important information related to care.</li></ol>Caring for someone with dementia is challenging - both physically and emotionally, so it's important to create a framework that allows you and other loved one's to constantly check in on how everyone is doing. Bringing extra support into the home environment or even moving to memory care may all have a time and place in your journey as caregiver. With each new stage comes a new set of challenges, but also the opportunity to re-evaluate the level of care for both the patient and the caregiver.

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Find resources and support for caregivers so that you can offer your loved one your best self every day.



Caregivers

Angelica Herrera-Venson reviews content related to healthy aging and caregiving for Seniorly. With deep experience in public health policy and analysis, Dr. Herrera-Venson has focused much of her career in gerontology and public health. She has over 20 years of experience informed by research in diabetes care management, dementia, caregiver wellbeing and mental health in minority aging populations. &nbsp;Dr. Herrera-Venson is a former National Institute of Mental Health fellow in geriatric psychiatry and a Health and Aging Policy Fellow. &nbsp;She holds a Doctorate of Public Health from Loma Linda University and a Master of Public Health in Epidemiology from the University at Albany, SUNY.&nbsp;

Associate Director, Data & Evaluation, National Council on Aging

If you or a loved one has received an Alzheimer's or related dementia diagnosis, you've probably considered lots of options for care. Luckily, Seniorly's here with a helpful framework for evaluating your loved one's care needs over time.

Caring for Family Members with Dementia:  A Helpful Framework 

Communication is the key to connecting with our fellow human beings – whether it’s a new friend or someone you’ve known your whole life. But as anyone who has a loved one with Alzheimer's disease or another form of dementia knows, communication can often become difficult as the disease progresses. In fact, it’s probably one of the hardest things for family and friends to accept – and understand.Conversational changes are often one the first signs that something isn’t quite right. You may notice some forgetfulness, repetition, or increased word-searching. And as the disease progresses, communication becomes more difficult, making it harder – both practically and emotionally – on both of you. For caregivers especially, the ability to communicate effectively is crucial to your ability to manage care duties.<h2>Why is communication so hard for dementia patients?</h2>The science part is (relatively) easy to understand.<a href="https://www.alz.org/alzheimers-dementia/what-is-dementia" target="_blank" rel="noopener noreferrer"> Dementia is caused by abnormal changes to the brain</a> – hindering communication between brain cells. The result? The person's ability to process thought, emotions, body language and even behavior can all be affected. So too can other elements of their experience of the world, frequently leading to confusion and distress.&nbsp;While Alzheimer's disease is the most common form of dementia, there are actually several different types of dementia, each with its own specific characteristics - and all share the chief symptoms of memory issues or memory loss, along with decline in problem-solving and language skills. While loss of working and long term memory is usually one of the <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3898682/" target="_blank" rel="noopener noreferrer">early identifiers of the disease</a>, communication difficulties are often another signal.In the early stages, changes may be minimal. But as time goes on, the person with dementia may find it hard to follow directions. They may not be able to get to a place they’ve gone many times before – or remember how to play a favorite card game. Working the microwave may suddenly become daunting. Even the process of putting toothpaste on a toothbrush can be a challenge. As dementia reduces their ability to remember and understand simple information about everyday activities, it’s easy for non-professional caregivers to become frustrated with having to continually repeat information or instructions.<h2>How relationships change when a family member has dementia</h2>It’s only natural for these changes to affect relationships. You may find yourself becoming a caregiver for a parent or partner. And the change in those dynamics can be overwhelming. It may feel embarrassing for the person with memory issues to be "needing care.” One former social worker described her frustration and sadness with her disease this way: “It’s hard for me to be the one asking for help – I’m used to being the caregiver.”Or it may be that the role of caregiver changes the long-held dynamic between two people - like a husband and wife or parent and child. In all cases, dementia will cause a re-ordering of existing dynamics and relationships, and this is a natural outcome of the disease. It's perfectly normal to feel a sense of loss or resentment, or both - and more.Relationship changes when a family member has dementia often shift over time, as the disease progresses and the patient’s experience of the world changes. Because of this, family members may need to regularly readjust and look for new ways to connect with their loved one.&nbsp;<h2> Common changes in communication caused by dementia</h2>So, how exactly does a person communicate with someone who has dementia? Communication is difficult - not just for the person with dementia, but for the friends, family members, and loved ones of that person. According to experts at the <a href="https://www.mayoclinic.org/healthy-lifestyle/caregivers/in-depth/alzheimers/art-20047540" target="_blank" rel="noopener noreferrer">Mayo Clinic</a> and Alzheimer’s Association, there are some commonly observed changes in language among dementia patients. Here’s an example of what to expect:<ul><li>Trouble remembering words</li><li>Using the wrong word or substituting a word</li><li>Describing a word in place of the word itself (e.g. “the white drink” for milk)</li><li>Beginning a comment and losing the train of thought, or other memory issues</li><li>Repeating questions, comments, or stories</li><li>Using more hand gestures</li><li>Frustration with the difficulty in speaking</li><li>And finally, speaking less – or withdrawing from conversations entirely</li></ul><h2>14 do's and don'ts for communicating with dementia patients</h2>So what can you do? First and foremost, try to be patient. Be mindful of the fact that it’s Alzheimer's disease or dementia that’s causing these changes, not necessarily the person. &nbsp;Remember too that effective communication approaches will vary depending on the stage of dementia and the individual. Because of this, it may take trial and error to find the best approaches and adaptability is often needed.&nbsp;&nbsp;Here are 14 conversation tips to make communicating more enjoyable and less frustrating for both of you.<ul><li>Do be patient. This one can’t be stressed enough! Whether the challenges are related to communication, attitude, behavior, or eating, caregivers and family members will at times find it difficult to stay patient and engaged - and this is all normal. As safety allows, if you need to leave the room, go for a walk, take time to eat, or anything else that you find self-soothing - do it! You will be a better support and resource for your loved one when you are in the right frame of mind.</li><li>Do make eye contact and use non-verbal cues or body language to encourage engagement. Try to face the person while engaging in dialogue and relax while waiting for responses.</li><li>Do speak slowly and simply when talking to a family member or loved one. Speak with clarity and use simple sentences and words. Avoid complex sentence structures.</li><li>Do allow time for their response. Those with dementia take longer to process information, so expect a lag time. And listen closely.</li><li>Do offer suggestions regarding what they’re trying to say if they are clearly struggling to find words.</li><li>Do use non verbal communication , such as a gentle touch, maintaining eye contact or leaning toward the other person while they are talking.</li><li>Do provide reassurance with small pats on the shoulder or back, or guide them in a direction by gently grabbing the back of their elbow and pointing.</li><li>Do promote agency. As the dementia progresses, limit questions to those requiring a yes or no. Encourage involvement by offering (easy) choices.</li><li>Do keep it positive. Avoid criticism and corrections that will just increase frustration.</li><li>Do adapt if a question or prompt is clearly not being received. Try asking your question another way if you feel you're not being understood, but remember that what you’re asking may be beyond your loved one’s abilities.</li><li>Do use visual cues if your loved one is struggling to manage instructions. Printing or drawing pictures or symbols that represent objects may be helpful for those with declining communication skills. This could be something as simple as laying out an outfit instead of saying "go get dressed". <a href="https://www.sayitwithsymbols.com/dementia-memory-care/" target="_blank" rel="noopener noreferrer">This</a> is a great site with resources to support visual cues communication techniques.</li><li>Do not argue or challenge their statements or feelings. Acknowledge that this is their reality at the moment and sympathize with how they must feel. It’s ok to affirm their questions or statements, respond or ask gentle questions. You may learn a lot.</li><li>Don't patronize. While your level of speech may be simplified, avoid patronizing tones, "baby talk" or other infantilizing communication techniques.&nbsp;</li><li>Don't overstimulate. If you want to hold a conversation, limit the number of auditory distractions that are present; turn off the tv or radio, set aside devices like laptops or cell phones. While this advice we can all heed, it's especially important for those with cognitive issues as their ability to tune out external distractions is often limited.</li></ul><h2>Tips for children on communicating with dementia patients</h2>All of this is good advice for adults, but what about when children or younger adults are around someone with dementia? Children may be confused or upset when a relative or neighbor begins to exhibit signs of dementia – especially if it’s someone they’ve known for a long time. Teenagers and young adults may avoid visiting loved ones with dementia because the changes make them uncomfortable. They may prefer to remember them as they were in the past. Or they simply may not know how to communicate. After all, we're taught that how a person communicates with others is key to understanding their character, right?<h2>9 activities for dementia patients to do with young children</h2>The<a href="https://www.nia.nih.gov/health/helping-children-understand-alzheimers-disease" target="_blank" rel="noopener noreferrer"> National Institute on Aging (NIA</a>) suggests that when children visit a loved one or acquaintance with dementia, sensory stimulation and a focus on hands-on activities may provide a more natural way of connecting. Make sure to prepare children and young adults for changes they are likely to observe, and plan a few activities that children can lead before the visit. If you're a parent or guardian of a young child, try your best to make sure your body language is relaxed and stress-free, as young children may be especially sensitive to stress.Here are a few of our favorite sensory activities for children and adults with dementia to do together. Some trial and error is needed here too, as the best activities will depend on your loved one’s stage of dementia and their personality.<ul><li>Puzzles are a collaborative and fun activity for those with dementia. Not only do they strengthen cognition, but they provide a sense of accomplishment for both older adults and young children. <a href="https://www.alzstore.com/puzzles-for-elderly-with-dementia-s/1826.htm" target="_blank" rel="noopener noreferrer">Some</a> are also designed specifically for people with dementia.&nbsp;</li><li>Arts-and-crafts projects like paint-by-number kits, magazine collages, painting rocks, painting a still life, or making slime or play-dough can be fun and rewarding for kids and seniors alike. This kind of hands-on activity allows for meaningful nonverbal communication.</li><li>Look through old photo albums, or have teenagers share their instagram feeds and narrate what they're sharing. It doesn't always have to be "one-way" communication, and it's important for children to feel encouraged and equipped to share their lives as well.</li><li>Play music. See how many songs older adults and children both recognize, or have each share their favorite songs. It’s fairly common for people with dementia to remember the words to familiar songs quite far into the progression of the disease. Play some traditional songs (or even carols) that both participants would know and then sing along. Toe-tapping and clapping is encouraged!</li><li>Play balloon tennis. Blow up a balloon and volley it from person to person. This is one of those low-stakes, failure free activities!</li><li>Blow bubbles- especially if you are outside with young children, this is an activity that is sure to put a smile on everyone's face.</li><li>Play with dolls. As there is some evidence that <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8950087/" target="_blank" rel="noopener noreferrer">doll therapy</a> has positive benefits for dementia patients, playing with dolls is a natural activity for younger children to connect with a family member with dementia. This is true for men with dementia as well.</li><li>Go online. Children may want to share their favorite simple online game apps, such as Slither, or Snowball, or pizza maker, or any number of piano apps.</li><li>Share a good book. As a person’s dementia progresses, they often find it difficult to read – but that doesn’t mean they don’t enjoy a good story. Younger children may want to practice their reading skills, while older children or young adults might have a favorite book they’d enjoy reading aloud. It’s not so much about the activity itself, but rather the bond that is formed by reading and listening. This is true for men with dementia as well.</li></ul><h2>10 questions to ask someone with dementia&nbsp;</h2>Interaction through questions can be a fun way to connect and communicate between loved ones of any age. You might want to start by sharing some of your own favorite memories, and “favorite things” to get them going. Try these fun conversation starters to inspire memories and get the conversation rolling.<ul><li>Did you ever have a pet? What kind?</li><li>Do you like to shop? What’s your favorite store?</li><li>What was your favorite food growing up? Do you cook or bake? What kinds of things?</li><li>Do you have a favorite family vacation?</li><li>What’s your favorite TV show or movie? Kind of music? Did you ever play an instrument?</li><li>What’s your favorite time of year? Why?</li><li>Who was your best friend growing up? What kinds of things did you do together?</li><li>What was your first job? What did you like about it?</li><li>What was your mother or father like?</li><li>Do you have any hobbies?</li></ul><h2>How to talk with someone with dementia</h2>Unfortunately for many patients in the late stages of dementia, language skills become increasingly difficult and those with the disease can become non-verbal, often withdrawing from social interactions. It’s no surprise that caregivers may also withdraw from regular interaction. In fact, for many late-stage dementia patients, a memory care facility is beneficial not only for the patient but also for the family members and loved ones. But even if you have professional caregivers managing care, it's important to still visit regularly to maintain connection.In fact, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5538738/" target="_blank" rel="noopener noreferrer">studies have shown</a> that finding ways to improve communication can help both parties, as non-verbal communication can help those with dementia maintain positive interaction with others. While many of the recommendations are similar to what's listed above, we're highlighting the most important ones here:Use touch. Offer a hug or a hand massage while you talk, brush their hair or give an at-home manicure. <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7672023/" target="_blank" rel="noopener noreferrer">Studies show</a> that human touch is incredibly important to overall health, and it can easily be overlooked as we transition from family member to caregiver.<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6731615/" target="_blank" rel="noopener noreferrer">Pet therapy</a>. It's no surprise that animals can provide a lifeline to an older adult with cognitive and communication challenges. If you don't have a suitable pet of your own, there are actually <a href="https://petpartners.org/?gad=1&amp;gclid=CjwKCAjw0ZiiBhBKEiwA4PT9z5eYOupe_DujPB67Sk_qau_vPSrSQAlC_u0vUFx8qaJq9IXGijeP7hoCIugQAvD_BwE" target="_blank" rel="noopener noreferrer">organizations</a> that provide pets for therapeutic visits.Ask simple yes or no questions where dementia patients can answer by a nod or shake of the head.Tactile Stimulation. think about sensory activities like knitting or sanding wood, folding laundry or organizing silverware, pens or pencils.And finally, never underestimate the joy your smile brings to them!

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Feeling challenged by communicating with a loved one with Alzheimer's or another form of dementia? Seniorly shares our best tips for managing communication with dementia patients.

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Communicating with people living with dementia who are nonverbal: The creation of Adaptive Interaction

Calming Effects of Touch in Human, Animal, and Robotic Interaction—Scientific State-of-the-Art and Technical Advances

Effectiveness of the dog therapy for patients with dementia - a systematic review

Has your loved one recently misplaced their car keys? Had trouble with getting the right Wordle answer three days in a row? Don’t worry. It’s more than likely the result of<a href="https://www.nia.nih.gov/health/do-memory-problems-always-mean-alzheimers-disease#:~:text=Forgetfulness%20can%20be%20a%20normal,lose%20things%20like%20their%20glasses." target="_blank" rel="noopener noreferrer"> normal aging</a> – or maybe temporary stress or a heavy workload.But if memory is on your mind, or if there’s a family history of<a href="https://www.alz.org/alzheimers-dementia/what-is-alzheimers" target="_blank" rel="noopener noreferrer"> Alzheimer’s disease</a> or related dementia – a visit to your primary doctor can help you determine if <a href="https://www.cdc.gov/aging/dementia/index.html#:~:text=Dementia%20is%20not%20a%20specific,a%20part%20of%20normal%20aging." target="_blank" rel="noopener noreferrer">dementia</a> should be a cause for concern or recommend further testing.&nbsp;<h2>Start a dementia journal&nbsp;for family members</h2>Whether they have a diagnosis or not, if you have serious concerns about a loved one’s memory, a <a href="https://dailycaring.com/keeping-a-dementia-journal-makes-caregiving-easier-7-things-to-track/?fbclid=IwAR2MtmBr4X7naZ7fbA_uza5libzFxo5ssOuan7bt4pdad9Gw7zeDMKYAyx8" target="_blank" rel="noopener noreferrer">dementia journal</a> may be a friend moving forward. Maintaining a journal will help you keep track of any confusion or memory-related incidents, more easily observe patterns, and track changes over time. And as dementia progresses, this is also a great place for family members and loved ones to jot down notes from doctor’s appointments and observations about memory from friends, family, and co-workers. Sound daunting? No worries! You don’t need to write in it every day – just when there is something new or important to note.&nbsp;Initially, a journal will help you record any warning signs or progression concerning memory issues. Worsening symptoms will alert you that it’s important to see your primary care provider. And these notes will be extremely valuable in documenting - and communicating - concrete changes. That’s especially important as backup when your loved one happens to be having a “good day” in terms of memory while at the doctor’s office.Plus, if you’re supporting a loved with dementia daily, it’s easy to miss subtle progressive changes. A journal helps you to see such changes more clearly - empowering you to support your loved one better.As memory and cognitive abilities decline, comparing your notes detailing your loved one’s symptoms with the 7 Stages of Dementia Chart (below) can help both you see where they are in the disease progression.<h2>6 categories to track in your dementia journal</h2>While each person will likely have their own way of setting up their journal, there are a few categories that will be important to track<ul><li>Managing everyday tasks: How is the patient managing activities of living like getting dressed, showering or mobility? How is their level of personal care? As the disease progresses, people with dementia may have added challenges with activities of daily living.</li><li>Mood &amp; behavior: Take note of particular times of day that anxiety, stress or communication skills seem to be more challenging. Are you seeing any evidence of <a href="https://www.seniorly.com/resource-center/caregivers/tips-on-how-to-deal-with-sundowners-syndrome" target="_blank" rel="noopener noreferrer">Sundowner's Syndrome</a>? What about food-related mood swings?</li><li>Eating &amp; nutrition: Depending on the stage of dementia (don't worry, we'll review that next), patients may have difficulty with eating or getting nutritious foods. Monitoring meals and hydration will help you better identify what's working well, what to avoid and when to serve meals. And if your loved one is having challenges with swallowing or chewing, we've got a great roundup of <a href="https://www.seniorly.com/resource-center/health-and-lifestyle/40-delicious-soft-food-recipes-for-the-elderly" target="_blank" rel="noopener noreferrer">soft food recipes.</a></li><li>Toileting: <a href="https://www.seniorly.com/resource-center/health-and-lifestyle/what-is-incontinence-care-for-the-elderly" target="_blank" rel="noopener noreferrer">Incontinence</a> and difficulty with toileting is a common problem as dementia progresses, and understanding how accidents happen may help you better plan to avoid them. &nbsp;Recording details may also help you determine which cleanup strategies work best (as not all incontinence accidents can be avoided).&nbsp;</li><li>Safety concerns: Many dementia patients exhibit wandering tendencies, and keeping your family member safe is at the top of the priority list. If you start to notice that wandering or leaving the premises is happening more frequently, it's a sure sign to reconsider <a href="https://www.seniorly.com/resource-center/senior-living-guides/memory-care-vs-assisted-living-whats-the-difference" target="_blank" rel="noopener noreferrer">memory care options</a> that may have more robust safety features.</li><li>Medical appointment notes: Ever walked out of a doctor's appointment feeling more confused than when you went in? It's a common experience we hear in support groups all the time, and taking notes during medical appointments can help you clearly identify what was covered, remember next steps and schedule follow-up appointments. It can also greatly aide in what we call "stakeholder communication" - the information that often needs to be shared with family members and loved ones about health care concerns.</li><li>Caregiver notes: Time and time again, we see caregivers focus on the challenge at hand instead of themselves. While this is unavoidable to some extent, it's helpful to give yourself a quick "stress rating" at the end of the day- just use a scale from 1-10. When you start to see the numbers regularly hovering at the higher end of the spectrum, that's a sure sign that you need to take a step back and focus on self-care. For some, this might mean calling in support, for others it might mean taking a day or two off, and for others it may be acknowledging that the level of care has surpassed your abilities, and that both you and your loved one might benefit from a more structured approach to care.</li></ul><h2>The 7 stages of dementia</h2>So now that you've got a great tool for monitoring changes over time, it's equally important to understand the stages of dementia so you can put those changes in context. When visiting your doctor, it may be helpful to confirm the current stage so you can set expectations for each family member and yourself) about the changing dynamic.Developed by Dr. Barry Reisberg, the 7 Stages of Dementia are often measured by the<a href="https://geriatrictoolkit.missouri.edu/cog/Global-Deterioration-Scale.pdf" target="_blank" rel="noopener noreferrer"> Global Deterioration Scale (GDS).</a>

<figure class="table"><table><tbody><tr><td style="background-color:#0b5394;border:1pt solid #000000;padding:5pt;vertical-align:top;">Stage&nbsp;</td><td style="background-color:#0b5394;border:1pt solid #000000;padding:5pt;vertical-align:top;">Description&nbsp;</td><td style="background-color:#0b5394;border:1pt solid #000000;padding:5pt;vertical-align:top;">Overview&nbsp;</td></tr><tr><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">1</td><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">No cognitive decline</td><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">No complaints or evidence of memory loss.</td></tr><tr><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">2</td><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">Very mild cognitive decline (age associated memory impairment) &nbsp;</td><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">Mild complaints of memory problems typically associated with normal aging, such as forgetting names or misplacing items. No clinical evidence of memory deficit and no obvious memory issues in work or social settings. &nbsp;</td></tr><tr><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">3</td><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">Mild cognitive decline (mild cognitive impairment – a.k.a. MCI diagnosis) &nbsp;</td><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">This is the earliest stage where memory issues become clearly evident. Cognitive decline may show up in poor work performance, getting lost in unfamiliar places, retaining or understanding the written word, and recalling names. Clinical testing may reveal decreased concentration or memory deficits. At this stage a person might also develop mild to moderate anxiety – and perhaps denial – surrounding their memory capabilities. &nbsp;</td></tr><tr><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">4</td><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">Moderate cognitive decline (mild dementia) &nbsp;</td><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">This stage is marked by memory loss concerning recent events and even personal history. The inability to perform complex tasks, travel, and handle finances is common, along with a decline in time and place orientation. Denial becomes greater. And a flattening of emotions and withdrawal from social situations may occur. &nbsp;</td></tr><tr><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">5</td><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">Moderately severe cognitive decline (moderate dementia) &nbsp;</td><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">Assistance is needed with certain tasks such as finances, doing laundry, and getting to appointments or other familiar places, however help with<a href="http://ms.gov/research-statistics-data-and-systems/research/mcbs/downloads/2008_appendix_b.pdf"> activities of daily living</a> (ADLs) such as eating and toileting is not necessary. The person may no longer be able to recall major events, or names and addresses. A lack of time and place orientation is also common.</td></tr><tr><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">6</td><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">Severe cognitive decline (moderately severe dementia)</td><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">While a person in this stage will almost always remember their own name, they may forget a spouse or caregiver’s name, at least occasionally. They can usually distinguish between familiar and unfamiliar faces. They are typically unaware of recent events in their lives and will have difficulty counting backward from 10. They may now need assistance with activities of daily living and may experience incontinence. Personality and behavioral changes start to emerge – and they may exhibit anxiety, agitation, hallucinations, delusions, paranoia, and obsessions.</td></tr><tr><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">7</td><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">Very severe cognitive decline (severe dementia) &nbsp;</td><td style="border:1pt solid #000000;padding:5pt;vertical-align:top;">Verbal communication is lost in this stage and assistance with eating, toileting and bathing and is required. Body rigidity is common. And a disconnect between the body and the brain creates a lack of motor skills, including the ability to walk.</td></tr></tbody></table></figure>

<h2>11 Resources for dementia care, help and support</h2>Whether you are the primary caregiver for a dementia patient or managing and coordinating dementia care through others, there's a lot to consider and even more to learn. In the early stages, outside assistance may not be necessary. But knowledge of the disease along with emotional and practical advice and support can be monumental. No matter how much you love someone, caregiving can be hard work – and there may come a time when you need caregiving help. This list will help you choose possible and appropriate care options at every level. (Note – applicable stages are an just estimate and may vary from person to person).Dementia hotlines (any stage)Need advice about a loved one’s dementia and care? The Alzheimer’s Association has a great national helpline (800-272-3900). They can recommend support organizations and other resources in your area. Other local resources might include an aging and disability center or area senior centers. Also check with your local hospital or clinic, primary doctor, neurologist, gerontologist or even a spiritual leader for information and assistance.&nbsp;Dementia support group (any stage)Check with your doctor, local council on aging, or the Alzheimer’s Association for Dementia and/or caregiver support groups. These can be invaluable for caregivers to share experiences and provide support for each other. Groups for those with the disease are often geared to those in early stages. Gathering with others going through the same thing can be helpful emotionally. Sometimes group meetings are planned with a nearby room offering arts and crafts, exercises, or music therapy for the person with dementia.<a href="https://www.memorycafedirectory.com/what-is-a-memory-cafe/" target="_blank" rel="noopener noreferrer">Memory café</a> (early to mid-stages)The Alzheimer’s Association and other local organizations offer memory cafés as a way for those living with dementia and their caregivers to gather in a social, non-judgmental environment. It allows patients to be out and about and lets them continue to be socially involved as long as possible.<a href="https://www.nia.nih.gov/health/what-geriatric-care-manager" target="_blank" rel="noopener noreferrer">Geriatric care manager</a> (stage 4 and beyond)<a href="https://www.seniorly.com/resource-center/senior-living-guides/the-benefits-of-a-geriatric-care-manager" target="_blank" rel="noopener noreferrer">Care managers</a> are not one size fits all – but most can adapt to your needs. Some will visit a client every day. Some check in daily but visit only as requested. Others just provide help on an as-needed basis, such as appointment-accompaniment, help with bills, clutter clean-up, etc. There is no national care manager registry, but most are trained professionals such as social workers or nurses. The Alzheimer’s Association can usually provide a list of care managers in your area. Ask questions regarding their education, experience, availability and ability to handle your specific needs. Be sure to ask for references as well – and check them!Aide/companion (stage 3 and beyond)An aide or companion can be a good support option for family caregivers or care managers. They can fill in when a family caregiver has to be away (or needs a break). They can also be a less expensive option for some of a care manager’s more basic (less skilled) tasks. They may perform household tasks, or simply provide companionship. Often a care manager, local organization, or even word of mouth, can help your find someone reliable.Unpaid family caregiving (any stage, but self care generally needed at 4 or beyond)Family caregivers can refer to a spouse, partner, child, or other relative or friend that provides in-home caregiving at no charge. Typically they would be live-in help, but could include unpaid help that comes in during the day (or night) when a primary caregiver is working (or sleeping).Paid in-home in home caregiving (stage 4 or 5 and beyond)Paid caregivers may live-in or come daily – or on some other regular schedule. They generally provide assistance with activities of daily living as well as household tasks, companionship, and the like.Assisted living (varies by person living physical and cognitive abilities)Assisted living is a good choice for someone that can no longer live alone, but can still do many things for themselves and is at no risk of wandering. This setting will provide socialization, activities, and food. Many times, an aide or caregiver can come in (at an additional cost) to provide additional care if needed. This is not an option for those in later stages of dementia or who may be at risk of wandering.Memory care community (typically dementia care stage 5 and beyond)Similar to assisted living, memory care communities may be stand-alone or part of a larger continuum of care. Usually a locked unit (to prevent wandering), food, activities, assistance with ADLs and all housekeeping is provided). This is a safe and enriching environment for those living with dementia. But as communities differ in quality, resident and employee turnover, and cost, be sure to research several before choosing the right fit for your loved one.Skilled nursing (stage 6 and beyond)Sometimes called nursing homes, this type of care would be appropriate for someone in the late stages of dementia, who is mostly non-verbal, sleeps a lot, and needs help with all activities of daily living. It may also be an option for someone in earlier stages who needs assistance but finds memory care too expensive – as many skilled nursing facilities accept patients on Medicaid. And as a person's personality changes over time and their ability to communicate is diminished, engaging professionals adept in spotting medical and other issues may be the preferred route. However, skilled nursing facilities tend to focus on short-term support and a long-term stay may not be possible.Hospice (stage 6 and beyond)You may be surprised to learn that hospice is available to help out someone in the later stages of dementia if they meet certain criteria. Whether at home or in a memory care community, their team, including a nurse, social worker, chaplain and certified nursing assistant (CNA), is invaluable. They add an extra element of support – and resources – for the patient, family, and community staff. The <a href="https://www.nahc.org/" target="_blank" rel="noopener noreferrer">National Association for Home Care &amp; Hospice</a> and <a href="https://www.nhpco.org/" target="_blank" rel="noopener noreferrer">National Hospice and Palliative Care Organization</a> are two great resources for families considering hospice care.

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Feeling overwhelmed by caregiving for a loved one with dementia or Alzheimer's disease? It's a big job, and Seniorly's here to share some tools and resources to help you manage care - and to care for yourself. 

How to Care for Someone with Dementia or Alzheimer's Disease

Sue Sveum is a contributing writer for Seniorly, specializing in Alzheimer's and dementia topics. With a background in healthcare, Sue has worked with the American Cancer Society and Hospice Care. Her transition to writing about seniors and memory loss was inspired by her personal experiences with family members affected by dementia. As an advocate for both dementia patients and their caregivers, Ms. Sveum aims to make a positive difference in the dementia journey for all involved by sharing her unique perspective and insights.

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