Dementia360 - A Presbyterian SeniorCare Network Program

Support for Dementia Family CaregiversBy Amy KowinskyLife does not prepare anyone to be a dementia family caregiver. As a result, families are often left feeling unprepared, alone, stressed and scared. And as dementia progresses, the journey can be just as difficult, if not more so, for the family as it is on the person with the disease. While dementia is a medical condition, much of the struggle isnt medical at all. Its emotional. Social. Relational. It touches every part of life yours and theirs. And every journey is unique. Theres a saying: If youve met one person with dementia, youve met one person with dementia. The disease looks different for everyone, and so does the caregiving experience.Thats why cookie-cutter advice rarely helps. Google searches can leave you more confused than before. As a result, many families are left feeling guilty, inadequate, confused, and frustrated, even though theyre doing the best they can.Presbyterian SeniorCare Network offers two levels of help for family caregivers of people living with dementia:Virtual support groups: Join one or both of our monthly virtual support groups. These groups offer a sense of community, giving you the opportunity to connect with others who understand the caregiving journey and to learn helpful strategies through shared experiences. These groups take place on:         3rd Wednesday of the month at 6pm         4th Tuesday of the month at 3pmDementia360: Dementia360 offers personalized, one-on-one coaching tailored specifically to your unique situation. Our expert guidance helps you navigate the challenges of dementia with greater clarity and confidence. At the heart of Dementia360 is the relationship between your family and a dedicated dementia care coordinator, someone who will walk beside you, offering personalized knowledge, practical skills, and ongoing support to help you keep your loved one at home, living comfortably and safely for as long as that remains your goal, while also helping you build a caregiving life that feels more manageable, supported, and sustainable. For more information about either of these two programs, Amy Kowinsky, Executive Director, Dementia360 can be reached at 412.435.8950 or [email protected]. Learn more at www.SrCare.org/Dementia360 .

One of the most emotional and challenging conversations families face after a dementia diagnosis is about driving. For most people, driving represents independence, freedom, routine, and control. It is far more than simply getting from one place to another. That is exactly why planning for the day driving needs to stop is so important. The reality is that if someone is living with dementia, there will likely come a time when they are no longer safe to drive. The question is not if it will happen, but how it will be handled. Families who start thinking about this early soon after diagnosis often experience far less conflict and distress than those who wait until there is a close call, a ticket, or an accident.In the best-case scenario, the person living with dementia makes the decision themselves to retire from driving. When that happens, it preserves dignity and gives them a sense of control. However, as dementia progresses, insight and judgment are often affected. Many individuals may not recognize changes in their abilities, even when those changes are clear to others. That can leave family members feeling stuck between protecting safety and protecting the relationship. Without thoughtful planning, caregivers can easily become viewed as the bad guy, which may create resentment and make future caregiving responsibilities even more difficult.Planning ahead allows families to approach this transition intentionally rather than reactively. It creates space for conversations before emotions are high and before safety is immediately at risk. It also helps ensure that alternatives are considered and routines are supported so that independence is maintained in other meaningful ways. Most importantly, early planning protects not only physical safety, but emotional well-being for both the person living with dementia and the people who love them.Stopping driving is not about taking something away. It is about adapting to changes in a way that preserves dignity, reduces conflict, and prevents crisis. When handled with preparation and support, this milestone does not have to become a battle. It can become part of a larger, thoughtful plan for living well with dementia.At Dementia360, we help families navigate these difficult transitions with clarity and confidence. If driving is becoming a concern or if you simply want to be proactive reaching out early can make all the difference. Planning ahead today can protect safety, relationships, and peace of mind tomorrow.This article was written by Pam Russo, CDP Care Coordinator for Dementia360, a program that provides guidance and support to families on the dementia journey. If you are feeling unprepared, alone, stressed or scared, Dementia360 can help. For more information, go to www.srcare.org/dementia360 , email [email protected] or call 412-435-8950

Supporting someone living with dementia requires patience, empathy, and thoughtful communication. As language skills change over time, the words we choose matter more than ever. The way we speak can either reduce anxiety and build connection or unintentionally cause frustration, confusion, or embarrassment. For families, caregivers, and friends, learning what not to say is just as important as knowing what to say. Small adjustments in communication can make a significant difference in preserving dignity, easing tension, and strengthening relationships.If youve ever walked away from a conversation feeling unsure, frustrated, or worried that you said the wrong thing, you are not alone. Dementia changes communication in ways that can feel unpredictable and overwhelming. Questions may be repeated. Memories may be unclear. Emotions may surface quickly. Without guidance, its easy to second-guess yourself. The good news is that with the right support and practical strategies, you can adapt confidently and compassionately, creating calmer and more meaningful interactions.Dementia360 provides personalized support, education, and practical tools to help families and caregivers communicate more effectively with loved ones living with dementia. Whether you are newly navigating a diagnosis or have been caregiving for years, expert guidance can make a meaningful difference. A simple conversation with Dementia360 can help you better understand communication changes at each stage of dementia, learn proven strategies to reduce conflict, gain reassurance and emotional support, and feel more confident in your daily interactions.The words we use truly matter. With the right approach, conversations can become calmer, more meaningful, and more connected. If youre looking for guidance, reassurance, or practical tools to improve communication, Dementia360 is here to help.This article was written by Pam Russo, CDP Care Coordinator for Dementia360, a program that provides guidance and support to families on the dementia journey. If you are feeling unprepared, alone, stressed or scared, Dementia360 can help. For more information, go to www.srcare.org/dementia360 , email [email protected] or call 412-435-8950.

We arent born knowing how to communicate with a person living with dementia but we can learn.Caring for a person who is living with dementia poses many challenges for families. People living with dementia from conditions such as Alzheimers and related diseases have a progressive biological brain disorder that makes itmore and more difficult for them to remember things, think clearly, communicate with others, and take care of themselves.In addition, dementia can cause mood swings and even change a persons personality and how they may interact. Improving your communication skills and learning the early signs of dementia can help make caregiving less stressful, as well as likely improve the quality of your relationship with your family member. Here are a few things you can do to help understand dementia and what your family members are experiencing.Recognize the symptoms. You can often recognize the early symptoms if a family member is struggling to participate in or complete everyday activities such as paying bills, using terms of endearment instead of specific names, changes in their vision, isolating themselves or refusing to leave their homes.Understanding what you dont know. As clich as this sounds, trying to understand what your family members are going through is an important part of providing them with the best care possible. Its also beneficial to learn how to communicate with them in ways that are supportive, understanding and empathetic.Sign-up for a Dementia Education virtual seminar.Free e-learning workshops through the Alzheimers Association are available at https://training.alz.org/. Additionally, Presbyterian SeniorCare Network is offering a free series of virtual seminars to help educate the local community on how to provide care for those living with dementia. To learn more, visit www.srcare.org/dementia-education.As a Dementia Care Center of Excellence, Presbyterian SeniorCare Network is committed to sharing its deep expertise to provide educational support that can improve dementia care, particularly for persons being cared for in their home by family members. To learn about services available to family caregivers, visit www.PSCNDementia360.orgEditors Note: This article was written by PresbyterianSeniorCare Network. Contact us at 877-851-1440 or visit www.SrCare.org to learn more.

Wandering is one of the most dangerous and scary issues associated with dementia. You can decrease the chances of wandering by focusing on triggers and creating a safe environment. This can mean less stress, anxiety and fear for all.Facts about wandering:       It can happen in ANY stage of the disease.       A person who has wandered once is at increased risk for it to happen again.       The best wandering prevention is before a wandering incident ever occurs.Causes, Triggers and Warning Signs for Wandering:       Boredom, restlessness and a lack of physical activity.       Frustration or anger with their caregiver, feeling the need to get away from them.       Feeling that they need to get home though they are home.       Not being able to find someone, something, or someplace.       Trouble finding the bathroom and opening an exterior door.       Delirium or confusion from a UTI or dehydration.       A move to a new, unfamiliar location.       A person who is high energy and constantly moving.Wandering Prevention:       Physical and mental activities throughout the day to prevent that bored and restless feeling.       Be positive and reassuring so that you are not the reason they want to leave.       If they say, I want to go home, be comforting and reassuring rather than telling them that they are home.       Dont leave them alone.       Be sure their bodily needs are met Are they hungry or thirsty? Do they need to use the toilet?       Increase lighting. A shadowy house can feel unfamiliar.       Put bathroom signs on the bathroom door.       Put stop signs on the front door or cover them with a camouflage poster.       Install barriers and alarms on doors and windows.       Get a wearable GPS device.       Let your neighbors know your family member is a wandering risk. Editors Note:  This article was written by Amy Kowinsky, Executive Director of Dementia360.  Dementia360 is a Presbyterian SeniorCare Network support program for family caregivers of people living with dementia.

Dementia and Decision Making: What Family Caregivers Need to UnderstandMaking decisions is something most of us do automatically. From the time we wake up, we choose what to wear, what to eat, how to spend our time, and who we want to be with. We decide how to spend our money, when to run errands, whether to attend an event, and how to respond to everyday situations. Even when decisions are small, they give us something important: a sense of control over our lives.For many couples and families, decision-making is shared. Spouses talk through finances, medical concerns, and family plans. Adult children may consult parents for advice. Some decisions are made independently, while bigger ones are discussed together.When dementia enters the picture, that rhythm begins to change.One of the most difficult transitions for family caregivers is realizing that the person who once helped make thoughtful, responsible decisions may no longer be able to do so safely. Dementia affects areas of the brain responsible for reasoning, judgment, planning, insight, and understanding consequences. As the disease progresses, decision-making becomes harder and less reliable.At first, the changes may be subtle. Your loved one may make small financial mistakes, forget appointments, or show poor judgment in situations that once felt routine. Over time, the difficulties often become more noticeable and more serious. There may come a point when you recognize that stepping in is no longer optional it is necessary.This shift can feel overwhelming.Many caregivers describe a deep sense of loss during this stage. It is not just the loss of memory. It is the loss of partnership. The loss of shared problem-solving. The loss of being able to lean on someone who once leaned on you.Even more challenging is the fact that people living with dementia often do not recognize their own impaired judgment. The part of the brain responsible for insight is frequently affected. That means your loved one may truly believe they are making sound decisions. They may not understand why you are concerned or why you are trying to help.This can lead to tension, frustration, and conflict.Some of the most pressing decisions relate directly to safety.Driving is one of the most common and emotionally charged examples. For many adults, driving represents independence. Giving up the keys can feel like losing freedom. Yet dementia can affect reaction time, spatial awareness, and decision-making behind the wheel. Without intervention, the risk of an accident increases potentially putting your loved one and others in danger.Another major concern is whether someone is safe at home alone. Dementia can increase the risk of wandering, leaving appliances on, forgetting to lock doors, or misjudging potentially hazardous situations. What once felt like a safe, familiar environment may gradually become unsafe without supervision.Medication management is another critical area. Taking too much medication, skipping doses, or mixing up prescriptions can lead to serious health consequences. A person may insist they can handle their pills independently, even when evidence suggests otherwise.Medical decision-making becomes more complicated as well. In hospital or clinical settings, understanding treatment options requires memory, reasoning, and the ability to weigh risks and benefits. Without support, a person with dementia may agree to treatments they do not fully understand or decline care that could improve comfort and quality of life.While safety concerns are often urgent and obvious, other decisions may seem smaller but are equally important.Quality of life decisions shape how a person experiences each day.For example, declining opportunities for social interaction can gradually lead to isolation. A person may say no to attending religious services, visiting friends, or participating in family gatherings. They may prefer sitting quietly at home, even if they once enjoyed being active and engaged.Over time, reduced social interaction can affect mood, cognition, and overall well-being.Similarly, choosing not to participate in activities can limit mental stimulation. A person may lose interest in hobbies, games, music, or conversation. What appears to be a simple preference, I dont feel like it, can slowly narrow their world.Eating is another area where decision-making matters. A person with dementia may forget to eat, insist they are not hungry, or lose track of mealtimes. Inadequate nutrition can lead to weight loss, weakness, low energy, and increased health risks.Personal hygiene decisions also carry consequences. Avoiding bathing or changing clothes may increase the risk of infections and discomfort. Yet the person may not recognize the need or may resist assistance.For caregivers, these daily decisions create a steady emotional strain. Each choice feels layered. If you step in, you may feel guilty for overriding their independence. If you do not step in, you may worry about safety, health, or long-term consequences.There is also the emotional weight of role reversal. An adult child may now be guiding a parent. A spouse may feel more like a protector than a partner. The balance of power in the relationship shifts in ways that can feel unfamiliar and uncomfortable.Frustration is common. You may find yourself thinking, You used to be so careful, or You would never have done this before. It is important to remember that these changes are caused by damage to the brain. They are symptoms of the disease, not stubbornness, laziness, or intentional defiance.Grief often accompanies this stage. Caregivers grieve not only who their loved one used to be, but also the shared decision-making that once defined their relationship. Even when your loved one is physically present, the dynamic you relied on may feel altered.At the same time, there is often an increased sense of responsibility. You may feel that every decision now rests on your shoulders. Financial planning, medical care, daily routines, and long-term arrangements may all require your oversight. The mental load can be exhausting.Understanding how dementia affects judgment can help reframe some of these challenges. The brain changes associated with dementia interfere with abstract thinking, risk assessment, and insight. This means a person may genuinely believe they are capable of managing tasks that have become unsafe. They are not choosing poor judgment; their brain is no longer processing information the way it once did.For family caregivers, recognizing this can soften some of the anger and confusion. It does not make the decisions easier. It does not remove the stress. But it can clarify that the conflict you feel is rooted in the disease itself.Decision-making in dementia is rarely black and white. It is a gradual shift, with responsibilities increasing over time. It involves balancing independence with safety, dignity with protection, and autonomy with well-being.Above all, it is a deeply human experience that carries complexity, emotion, and love.If you are navigating this transition, know that the weight you feel is real. The responsibility is significant. And the mix of grief, frustration, and protectiveness you carry is a natural response to a difficult journey.This article was written by Amy Kowinsky, RDN, CDP, Executive Director of Dementia360, a program that provides guidance and support to families on the dementia journey. If you are feeling unprepared, alone, stressed or scared, Dementia360 can help. For more information, go to www.srcare.org/dementia360 , email [email protected] or call 412-435-8950.

Executive function is a term used to describe the brain skills that help us plan, make decisions, stay focused, and carry out everyday tasks. You can think of it as the brains management system. Just like a conductor leads an orchestra by guiding each musician on when and how to play, executive function helps different parts of the brain work together smoothly. When this system is working well, it allows us to organize our day, follow steps, manage our time, and control our emotions.These skills are used in many parts of daily life, often without us even noticing. For example, when you plan what to eat, remember an appointment, follow a recipe, or carry on a conversation, you are using executive function. It helps you stay focused on what you are doing, ignore distractions, and switch your attention when needed. It also helps you control impulses, solve problems, and keep track of important information in your mind for a short time.As people age, especially if they are living with dementia, executive function can begin to decline. This means the brain has more difficulty organizing and managing tasks. A person may find it harder to start something, even if it is familiar, like getting dressed or preparing a meal. They may have trouble planning ahead or figuring out the steps needed to complete a task. Staying focused can also become difficult, and distractionseither from the environment or from their own thoughtscan make it hard to finish what they started.Changes in executive function can also affect memory and thinking in different ways. A person might have trouble remembering what to do next, following directions, or keeping track of details. Tasks that once felt simple may now feel confusing or overwhelming. It may also take longer to understand information or respond to questions. These changes are not due to laziness or lack of effort but rather changes in how the brain works.Emotions and behavior can also be affected. Some individuals may become more easily frustrated, especially when something does not go as expected. They may feel overwhelmed or anxious when their routine changes. Others may act more impulsively, saying or doing things without thinking them through, or they may withdraw from social situations because it feels too difficult to keep up. These changes can be challenging not only for the person experiencing them but also for their loved ones.Executive function difficulties can show up in everyday ways, such as misplacing items, running late, struggling to complete tasks, or having trouble switching from one activity to another. These challenges can affect a persons independence and confidence over time.Understanding executive function can help make sense of these changes. For caregivers and family members, it is important to remember that these difficulties are part of the condition and not something the person can control. Dementia 360 can offer strategies and practical tools to help support and maintain quality of life for the individual with dementia. This article was written by Shawna Sanders, CTRS, CDP, PCHA, Care Coordinator for Dementia360, a program that provides guidance and support to families on the dementia journey. If you are feeling unprepared, alone, stressed or scared, Dementia360 can help. For more information, go to www.srcare.org/dementia360 , email [email protected] or call 412-435-8950.  

People living with dementia often stop doing things they used to enjoy. As the disease gets worse, it can be harder for them to remember steps, stay focused, or feel confident. Because of this, they may pull away from family, friends, and daily chores.We know that older adults who stay active and involved are usually happier. That is why meaningful activities are so important in dementia care.As dementia moves forward, a person may need help planning their day. Without help, they may spend too much time sleeping or watching TV. While rest is important, too much sitting and doing very little can lead to boredom. It can also make it harder to sleep well at night.Doing simple, purposeful activities can help a person feel good about themselves. Everyone wants to feel useful. Even small tasks, like folding towels, watering plants, setting the table, or listening to favorite music, can bring joy. These activities remind the person that they still matter.Purposeful activities also help lower stress. When a person has something to do, they are less likely to feel frustrated, anxious, or upset. Being involved can help them feel calm and relaxed. It can also prevent boredom, which sometimes leads to anger or restlessness.Activities are even better when family and friends join in. Working on a puzzle together, baking cookies, looking at photo albums, or taking a short walk can create special moments. These shared times help everyone feel more connected.Good activities for people with dementia should bring meaning, joy, and hope to their lives. These activities should use the persons skills and strengths, so they can feel successful and confident. They should be fun and enjoyable, not stressful or too hard. It is also important to include family and friends whenever possible, because shared activities help everyone feel more connected. Good activities are always respectful and appropriate for adults. They should help the person feel normal and valued. Most importantly, the focus should be on enjoying the activity, not on doing it perfectly.As dementia changes a persons abilities, activities may need to be made simpler. It is okay to break tasks into small steps or help when needed. What matters most is that the person feels included and valued.Meaningful engagement is not about staying busy all the time. It is about helping a person feel happy, important, and connected. With patience and kindness, caregivers can use simple activities to improve comfort, dignity, and quality of life.This article was written by Shawna Sanders, CTRS, CDP, PCHA, Care Coordinator  for Dementia360, a program that provides guidance and support to families on the dementia journey. If you are feeling unprepared, alone, stressed or scared, Dementia360 can help. For more information, go to www.srcare.org/dementia360 , email [email protected] or call 412-435-8950. 

Maintaining positive, loving communication in the midst of the daily stress of caring for a family member living with dementia can be challenging for everyone involved, but it is essential for the health and well-being of each member of the family.How you talk with your family member, how much they understand, and how you make them feel when you are talking with them impacts your relationship, the overall vibe at home, and whether they are accepting of your help and guidance or refuse it.Positive Communication Approaches Eliminate Distractions: Minimize extra noise (fans, radios, whistling hearing aids) and visual distractions (glasses on/clean, TV off). If the person is seated, sit down; connect with them at eye level. To get their attention, gesture, smile, offer your hand and make eye contact.Avoid Conflicts: A person living with dementia will forget facts, but they will never forget how you make them feel. Rather than repeatedly arguing about tea kettles left on the stove, buy an electric kettle with an automatic off. Label cabinets with pictures to avoid frustrating searches and promote independence. When they talk about long-ago events as though they are currently happening, or refer to someone who has passed as alive, resist correcting them; join them in their world rather than forcing them into yours.Keep it Simple: Break tasks down into simple steps; use five words or less in a sentence, visuals instead of words when possible, and non-verbal cues like pointing or showing. Be patientwait at least 20-30 seconds for answers and offer a choice between two options rather than asking them an open-ended question or too many choices.Be Calm: People living with dementia are highly empathetic, often mirroring the emotionsgood and badof their caregivers. So, be aware of your body language, facial expressions and tone of voice. If youre becoming irritated or frustrated, walk away, take a deep breath, and try again when you are relaxed.As a Dementia Care Center of Excellence, Presbyterian SeniorCare Network is committed to sharing our expertise and providing educational support to improve dementia care, especially for people living with dementia at home. To learn more about services for family caregivers visit PSCNDementia360.org.Editors Note: This article was written by Presbyterian SeniorCare Network. Contact us at www.SrCare.org to learn more.

When a loved one living with dementia seems unmotivatedsaying no to everything or sitting for long periodsits easy to assume theyve lost interest or are just being stubborn. But what if its not a lack of motivation at all?Dementia changes the brain in ways that make starting and finishing even simple tasks feel overwhelming. Things like getting dressed, making a snack, or beginning a load of laundry can suddenly feel confusing or too big to handle. Its often not that they cant do these thingsits that they dont know how to get started. After repeated struggles, confidence drops. It simply feels safer to do nothing.Sometimes all thats needed is a gentle jump start. Small adjustments can rebuild confidence and create moments of success.If youre feeling frustrated or unsure how to help, youre not aloneand you dont have to figure it out by yourself. The team at Dementia360 is here to guide and support you with practical strategies that work in real life. Reach out today and lets help your loved one stay engaged, confident, and connected.This article was written by Pam Russo, CDP Care Coordinator for Dementia360, a program that provides guidance and support to families on the dementia journey. If you are feeling unprepared, alone, stressed or scared, Dementia360 can help. For more information, go to www.srcare.org/dementia360 , email [email protected] or call 412-435-8950

If youve ever been so tired you felt like you might fall overbut you kept going because someone needed youyoure not alone. Many caregivers feel this way. Your body is worn out, but your mind wont slow down. Your heart feels full of love, stress, and worry all at the same time. This is more than just being tired. Were calling it exhaustlessness.Exhaustlessness is when you are very tired, but you cant really rest. Your body wants sleep, but your brain keeps thinking. You may lie down at night and still think about medicine times, doctor visits, or what needs to be done tomorrow. Even when you sit still, your mind feels busy.There are a few parts to this feeling. First, your body feels weak and heavy. Your eyes may burn, and you may feel like you are running on empty. Second, your mind feels restless. You keep thinking about what might happen next or what you might have forgotten. Third, your emotions feel big. You love the person you care for, but you may also feel worried, sad, or even frustrated. All of these feelings can happen at the same time.Exhaustlessness often happens because you care so much. When someone you love needs help, you step up. You stay up late. You wake up early. You push through the day even when you feel drained. Love gives you strength. It helps you keep going when things are hard. But even strong people need rest.  If you live in this tired-but-cant-rest feeling for too long, it can affect your health. You might feel cranky or cry more easily. You may get headaches or catch colds more often. Thats your bodys way of saying it needs care, too.The hard part is that many people may not see how tired you really are. From the outside, you may look like you are handling everything. Inside, though, you may feel stretched thin. Its okay to admit that caregiving is hard work. Its okay to say you need help.Taking care of yourself does not mean you love your person any less. It actually helps you care for them better. Try small steps. Take a short walk. Sit quietly for a few minutes. Ask a friend or family member to help for an hour. Talk to someone you trust about how you feel. Even small breaks can help your body and mind reset.Most of all, remember this: you matter, too. Your needs are important. You are doing meaningful work, and your love makes a difference every single day. If you feel exhaustlessness, you are not weakyou are human. Be gentle with yourself. You deserve care just as much as the person you are caring for.This article was written by Pam Russo, CDP Care Coordinator for Dementia360, a program that provides guidance and support to families on the dementia journey. If you are feeling unprepared, alone, stressed or scared, Dementia360 can help. For more information, go to www.srcare.org/dementia360 , email [email protected] or call 412-435-8950

Feelings You May Experience WhenYour Spouse or Significant Other Has Dementia Dementia can change many aspects of a relationship and you may find your role in the relationship has changed. It is normal to feel a wide range of emotions on your caregiver journey. Because of your history with them and/or strong emotional bonds you have, the emotions you feel as a caregiver can be quite strong as well.One of the most overlooked challenges some couples face is how to deal with the altered intimate or romantic relationship. Many feelings can arise as you lose your significant other to dementia. It is normal to mourn the loss of your close relationship, sense of intimacy, and familiarity with your significant other, while they are still living. This is unique to the dementia journey and is called anticipatory grief.There are ways to stay connected intimately, even when loneliness, frustration or other negative feelings are present. Here are a few ideas to try:         Try to take some time each day to just be their spouse or significant other when you are not focused on caregiving tasks.         Physical touch is important for both of you. Hugs, massages or dancing can be great ways to connect.         Look at old photos and talk about the good times you have had together, such as family reunions, holidays and fun vacations.         Listen to music that reminds both of you of good times.Feelings you may experience can include:         Anger or Frustration: I cant take it anymore!         Sadness or Grief: This isnt what we had hoped our lives would look like.         Loneliness: I miss having someone to talk to and the relationship we had.         Resentment: I have to do EVERYTHING at home now.         Guilt: I shouldnt feel this way.         Worry or Fear: What will happen if things get worse?         Embarrassment: What will other people think?This list is not all inclusive and it is important to know that no feelings are right or wrong, and that what-ever you are feeling is VALID.There are various ways to manage these feelings and the team at Dementia360 can help you explore what might work for you. This article was written by Shawna Sanders, CTRS, CDP, PCHA, Care Coordinator  for Dementia360, a program that provides guidance and support to families on the dementia journey. If you are feeling unprepared, alone, stressed or scared, Dementia360 can help. For more information, go to www.srcare.org/dementia360 , email [email protected] or call 412-435-8950. 

A new dementia diagnosis for a loved one is a shock. It means your life will be different than what you thought it would be. Now, in addition to being a wife, husband, son or daughter, you are a caregiver for someone with an unpredictable, progressive disease.  Or maybe the diagnosis was made a while ago, but lately, it seems that they need more help from you than they did last year, or last week, or even yesterday.Here are some strategies for managing the role of caregiver:TAKE A BREAK FROM CAREGIVINGThis isnt selfish; its needed for your own well-being. You need to stay physically and mentally healthy to be an effective caregiver.NOURISH YOUR RELATIONSHIPSTake time to be the husband, the wife, the daughter, the son, the friend you always were. Maintain social connections for your well-being and the well-being of the person for whom you are caring. They still need you, they need emotional connections, they need to feel loved and know that they still matter.CREATE A ROUTINEAs dementia progresses, the familiarity of a routine will help them to be as independent with care as possible for as long as possible.JOIN A SUPPORT GROUPCaregiving can be isolating, and being with others in similar situations is a great way to receive support and validation, and to realize you are not alone.OTHER THINGS TO REMEMBERWhen youre frustrated, step away for a moment, calm down and then try again. Let people in your life know what you need from themdont make them guess, tell them.  Learn as much as you can about the disease, what to expect, and what your family member needs from you. Life does not prepare anyone to be a dementia caregiver.  Dementia360 can help.By giving you the support, resources and connections you need to be an effective caregiver, you will be able to keep your family member at home, living comfortably and safely, for as long as possible.You dont have to face this aloneits never too early or too late to ask for help. To connect with a Dementia360 consultant call 412.435.8950, email [email protected] or visit PSCNDementia360.org.

If youre caring for someone with dementia, you may have faced a painful and confusing situation: your loved one insists nothing is wrong. They may deny memory problems, refuse help, or become upset when you suggest they need support. This reaction is often not stubbornness or denial. It may be anosognosia.Anosognosia is a neurological condition in which a person is unaware of their own cognitive impairment. It is common in individuals living with Alzheimer's disease and other forms of dementia. Importantly, this lack of awareness is not a psychological defense mechanism. It is caused by changes in the brain that affect insight and self-monitoring. In other words, the person truly does not recognize their limitations.Understanding this distinction can shift how you respondand reduce some of the emotional burden you may be carrying.When someone has anosognosia, they might confidently insist their memory is fine despite clear problems. They may blame others for misplaced items, resist help with medications or finances, or refuse to stop driving even after close calls. Sometimes awareness seems to come and go, which can be especially frustrating. One day they acknowledge difficulty; the next day they firmly deny it. These fluctuations are part of the condition, not a sign that they are choosing to be difficult.Dementia affects areas of the brain responsible for judgment, insight, and self-reflection. When those systems are impaired, logical explanations rarely work. Trying to convince someone they have dementia often leads to arguments, damaged trust, and emotional exhaustion for both of you. From their perspective, they are functioning normally. No amount of evidence feels persuasive because the brain systems needed to process that evidence are compromised.For caregivers, this can be one of the hardest aspects of dementia. You may feel hurt when your loved one accuses you of exaggerating. You may feel frightened for their safety or frustrated when they refuse help. It is also common to feel guilty for feeling angry. These reactions are normal. Caring for someone who does not believe they need care can feel isolating and relentless.While you cannot force awareness, you can adjust your approach. Avoiding direct confrontation often reduces distress. Instead of insisting, You have dementia and cant drive, you might say, The doctor recommends taking a break from driving. Using neutral or external reasons for changes can lower defensiveness. Shifting the goal from gaining agreement to ensuring safety can also help. The objective is not to win an argument about diagnosis, but to protect well-being.It can be helpful to accept that insight may not return. When you stop expecting your loved one to understand their condition, their resistance may feel less personal. Their lack of awareness is a symptom of brain disease, not a character flaw or a sign of mistrust.At the same time, your well-being matters. Support groups, counseling, and regular respite can make a meaningful difference. Many caregivers find relief in speaking with others who understand the unique strain of anosognosia. Learning about dementia progression can also help you anticipate challenges and plan ahead.If lack of awareness begins to create serious safety riskssuch as unsafe driving, vulnerability to financial exploitation, or refusal of critical medical careit may be time to consider legal and medical planning. These steps are never easy, especially when your loved one insists nothing is wrong. Yet protecting them sometimes requires making decisions they cannot fully understand.Anosognosia can feel like losing shared reality with someone you love. But beneath the confusion and defensiveness, the person is still there. By responding with calm redirection rather than confrontation, you can reduce conflict and preserve dignity. You cannot restore insightbut you can provide safety, compassion, and steady support in the face of a challenging and often heartbreaking symptom.This article was written by Shawna Sanders, CTRS, CDP, PCHA, Care Coordinator  for Dementia360, a program that provides guidance and support to families on the dementia journey. If you are feeling unprepared, alone, stressed or scared, Dementia360 can help. For more information, go to www.srcare.org/dementia360 , email [email protected] or call 412-435-8950. 

Planning for the future with someone who is living with dementia is an act of care, respect, and partnership. Dementia, including conditions such as Alzheimer's disease, can gradually affect memory, decision-making, and communication, which makes early conversations especially important. Taking time to discuss preferences about healthcare, living arrangements, finances, and daily routines ensures that the persons voice remains central as circumstances change. Thoughtful planning not only helps reduce uncertainty and stress for family members and caregivers, but also preserves dignity, autonomy, and a sense of control for the individual, fostering trust and clarity during an evolving journey.  A few of the important documents to consider include the following: An advance directive is a legal document that goes into effect only if you became unable to speak for yourself, as the result of disease, severe injury, or dementia. It helps others understand your values and wishes for end of life care. Your health care team would use this document as a guide for your care, in addition to speaking with your durable power of attorney for health care. You might think of it as a living documentone that you can adjust as your situation changes because of new info or a change in your health.   The parts of an advance directive are          A living will outlines your values and preferences for the treatments you would and would not want if you became unable to speak for yourself. Some forms allow you to select specific life-sustaining procedures you would and would not want. Some are more values based. The living will can also include directions for organ and tissue donation, whether you would like to receive hospice services, and even the care of your body after death.            A durable power of attorney for health care is a legal document names a person to make medical decisions for you in the event you became unable to do so. This person may also be referred to as a healthcare proxy or healthcare agent. It is critical for this person to understand your preferences, so that if they had to make decisions on your behalf, their job would be making sure the decisions you already made were put in place, rather than guessing what it is that you would want. When choosing a healthcare proxy, think about people you know who share your views and values about life and medical decisions and that you trust to follow through with your decisions. Your proxy might be a family member, a friend, or someone in your social or spiritual community. Be sure to check with those you choose as your healthcare proxy and alternate before you name them officially. Make sure they are comfortable with this responsibility.          Depending on the form you use, the advance directive may include a living will AND a durable power of attorney component, or they may be separate forms. Other Forms That Can Become Important:          A DNR (do not resuscitate) order. A DNR order tells medical staff that you do not want life support measures if your heart stops or is beating unsustainably. If this is consistent with your values, you may want to have a DNR order as part of your medical file if you go to a hospital. Posting a DNR next to your bed might avoid confusion in an emergency situation. Without a DNR order, medical staff will make every effort to restore your breathing and the normal rhythm of your heart.            POLST (Physician Orders for Life-Sustaining Treatment) forms provide guidance about your medical care preferences in the form of a doctor's orders that you typically create when you are near the end of life or critically ill and know the specific decisions that might need to be made on your behalf. These forms serve as a medical order in addition to your advance directive. They make it possible for you to provide guidance that healthcare professionals can act on immediately in an emergency.     This article was written by Shawna Sanders, CTRS, CDP, PCHA, Care Coordinator for Dementia360, a program that provides guidance and support to families on the dementia journey. If you are feeling unprepared, alone, stressed or scared, Dementia360 can help. For more information, go to www.srcare.org/dementia360 , email [email protected] or call 412-435-8950.

Because Dementia is DifferentBy Amy KowinskyIts hard to pinpoint exactly when it began. Was it the first time she told you the same story twice in one visit? Or the moment you realized he just wasnt acting quite like himself? In hindsight, the signs feel obvious but in the moment, its human nature to explain them away. We all forget things sometimes. Hes just been under a lot of stress.Lets talk about the elephant in the room the fear of a dementia diagnosis. Its one of the scariest conversations families face. The uncertainty, the what ifs, the worry about what comes next and we all know that dementia has no cure, that it gets worse over time, and that medications often dont help. Those words alone are enough to make many people normalize the signs they see, avoid the conversation, or delay seeing a doctor. Researchers are working tirelessly for a cure, and we all hope for the day when no one has to face dementia. But right now, countless families are in the thick of it. Chances are, you know one.As the disease progresses, dementia can be as hard, if not harder, on the family caregiver as on the person living with it. Life doesnt prepare you for this role. One daughter said, I think about it all the time. Am I doing the right thing for my mom? It feels like a second job I was never trained for and dont feel competent at.While dementia is a medical condition, much of the struggle isnt medical at all. Its emotional. Social. Relational. It touches every part of life yours and theirs. And every journey is unique. Theres a saying: If youve met one person with dementia, youve met one person with dementia. The disease looks different for everyone, and so does the caregiving experience.Thats why cookie-cutter advice rarely helps. Google searches can leave you more confused than before. As a result, many families are left feeling guilty, inadequate, confused, and frustrated even though theyre doing the best they can.If this sounds familiar, youre not alone. And you dont have to navigate this journey without help. Dementia360 exists to give families the support, resources, and guidance they need to keep a loved one safe and comfortable at home for as long as thats the goal. At the heart of Dementia360 is the relationship between your family and a dedicated dementia care coordinator, someone who will walk beside you, offering personalized knowledge, practical skills, and ongoing support so you can feel confident and capable in your role. Wherever you are in the dementia journey, help is available.  While we cant cure dementia, it is definitely possible for families to live better with it.   Amy Kowinsky, Executive Director, Dementia360 can be reached at [email protected] or [email protected] 

How to Have a Successful Doctors Appointment with a Family Member Living with DementiaDoctors appointments can be stressful for both a person living with dementia and the family members who care for them. With a little preparation and thoughtful planning, however, these visits can become much more productive and less overwhelming. Understanding the needs and routines of the person with dementia and preparing ahead of time can help ensure that the doctor receives accurate information while the patient feels supported and comfortable.One of the most important factors to consider when scheduling an appointment is the time of day that works best for the person living with dementia. Many individuals with dementia function better during certain times of the day, depending on their sleep patterns and energy levels. For example, if a caregiver knows that Mom typically does not get up until 10:30 in the morning, scheduling an 8:00 a.m. appointment may set everyone up for a stressful start to the day. Choosing a time when the person is usually awake, calm, and alert can make the visit smoother and help the doctor get a clearer picture of how the patient is truly doing.It is also important to plan who will accompany the person with dementia to the appointment. Individuals with dementia should not attend medical visits alone as they may have difficulty remembering information, communicating symptoms, or understanding instructions. Having a caregiver or trusted family member present ensures that important information is shared and remembered. Caregivers can help normalize the idea of attending the appointment together by explaining it in a supportive way. For instance, they might say, The doctor recommends that all of his patients bring another set of ears to their visits. This approach helps the person with dementia feel respected rather than monitored.Preparation before the appointment is another key element of a successful visit. Caregivers should take time beforehand to write down questions or concerns they want the doctor to address. It can be easy to forget important topics during a busy appointment, especially when emotions are involved. A written list helps keep the conversation focused and ensures that the caregiver leaves with the information they need to support their loved ones care.At times, caregivers may need to discuss sensitive topics that could be upsetting or embarrassing for the person living with dementia. Issues such as driving safety, hallucinations, incontinence, anger, or anxiety may be difficult to address openly during the appointment. In these situations, caregivers can communicate privately with the physician before the visit. Many medical offices provide electronic patient portals where caregivers can send messages in advance. Alternatively, caregivers can call the office or provide a written note describing their concerns, so the physician is aware of them without discussing them directly in front of the patient.As dementia progresses, caregivers may also want to talk with the physician about adjusting the frequency and format of appointments. Regular follow-up visits are important, but traveling to the office may become more challenging over time. Caregivers can ask whether visits could occur every six months instead of every three, depending on the patients condition and stability. It may also be possible to schedule virtual appointments when appropriate, which can reduce the stress of transportation and waiting rooms while still allowing the doctor to check in and monitor the patients health.Ultimately, a successful doctors appointment for a person living with dementia begins with thoughtful planning and open communication. By scheduling visits at the right time of day, ensuring supportive supervision, preparing questions ahead of time, and finding respectful ways to discuss sensitive concerns, caregivers can help make medical appointments more effective and less stressful for everyone involved. This article was written by Jean Royse, CDP, Care Coordinator for Dementia360, a program that provides guidance and support to families on the dementia journey. If you are feeling unprepared, alone, stressed or scared, Dementia360 can help. For more information, go to www.srcare.org/dementia360, or email [email protected] or call (412) 435-8950.

If you or your family member is experiencing cognitive changes, traveling can still be on the bucket list. The three aspects of a vacation trip: looking forward to the getaway, experiencing the trip itself, and reminiscing about the trip after you return home those events all produce good endorphins for our brain. Those endorphins are good for not only the person living with the disease, but also for the family care partners.The Who, What, When, Where & How of the vacation may look different with dementia, but its possible (and encouraged!) to continue having get-aways that are good for everyone involved. With a little planning, this time away can be beneficial for everyone.Before the Trip: Consider locations/activities that your family member will enjoy & that may not be overwhelming. Be sure, when planning the itinerary, that you work in down time for everyone; this will be helpful as it gives the brain time to recharge and rest a bit. Plan travel during the best time of day for them and consider driving instead of flying. Airports can be very fast-paced, loud & overstimulating for many. If you plan on flying, avoid very early flights and tight connections; those can cause extra stress for both you & your family member.Make a packing list ahead of time so you dont have the pressure of trying to remember everything to pack; once youve packed, double check the luggage one last time to assure that your family member didnt remove any items needed for the trip. Pack comfortable clothes & shoes, along with items that may bring comfort to your family member. Consider packing a just in case bag with medicine, water/snacks, a change of clothes and comfort items; you never know when you need back up.If you are traveling with others, talk with them about what to expect. This allows others to understand why your family member may be behaving in a particular way and how best to help them and you both. Ask if someone would be willing to give you a few hours to clock out & relax while youre away. After all of the planning you put forth for the trip, its really nice if youre able to unplug from caregiving for a bit.During the Trip: Try to keep your family members routine as close to normal as you can; it can be very helpful in terms of them knowing what to expect next. Its also advisable to keep waking/sleeping times consistent where possible. Watch for signs that its time to take a break; your family member may need this both physically and cognitively. Work breaks into the day so the brain can shut down and recharge. If eating out, try to get reservations to avoid the wait, and consider going off hours to avoid large crowds. It may be helpful to not share the complete itinerary with your family member; that can be very overwhelming & confusing for someone with a brain disease. Overload with the plan for the day can be too much at times.After the Trip: With dementia, someone may not always be able to retrieve the memories of a vacation, but it can be very helpful to have photos of the trip. Printing them out into a small photo album can bring comfort to someone who enjoys looking through photos. Congratulate yourself! You did it with some planning ahead, time away can be very beneficial for both of you. And while planning is important, so is flexibility if things dont turn out quite the way you pictured. This article was written by Michelle Govan, RN, BSN, CDP, Care Coordinator for Dementia360, a program that provides guidance and support to families on the dementia journey. If you are feeling unprepared, alone, stressed or scared, Dementia360 can help. For more information, go to www.srcare.org/dementia360, or email [email protected] or call (412) 435-8950.