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Understanding Dementia: Why it MattersAddressing the complexities of a dementia diagnosis can be a challenging task, especially when communicating this to a younger audience. A dementia diagnosis impacts everyone in the family, including the youngest members. Children are keen observers and will likely notice changes in their loved one. Without understanding, these changes may leave them feeling confused, scared, or even responsible. Therefore, understanding the basics about dementia and communicating it in an age-appropriate way is critical for them to process what is happening. Dementia: What it isExplanation and SymptomsDementia is a term that represents several conditions that affect brain functions such as memory, thinking skills, and the ability to perform everyday activities. This group of symptoms impacts cognitive function significantly and is persistent enough to interfere with daily life and independence. Symptoms can include memory loss, difficulty in thinking or problem-solving, challenges with communication, and notable changes in mood, personality, or behavior. Types of DementiaThere are various types of dementia, each with unique symptoms and progression patterns. Alzheimers disease is the most common, contributing to 60-80% of cases. Vascular dementia often occurs after a stroke. While these are the most recognized forms, there are many other types like Lewy body dementia, frontotemporal disorders, and mixed dementia. How it Affects SeniorsWhile dementia is not a normal part of aging, its more prevalent in seniors. It can significantly alter their behavior, personality, and ability to perform daily tasks. This often leads to them needing assistance in their day-to-day life. The Childs Perspective: Understanding Their WorldviewExplaining dementia to children requires empathy and understanding of their world. Kids comprehension of health, illness, and aging varies widely based on their age and maturity level. Thus, when crafting your explanation, its essential to consider their cognitive development stage and adjust your language and explanations accordingly. Talking About Dementia: Preparing the ConversationApproaching the subject of dementia should be well-thought-out. Choose a calm and quiet time when the child wont be distracted or rushed. This will give you both the space to navigate the conversation and handle the emotions that might arise. Breaking the NewsWhen and HowIntroduce the topic gently and gradually. You might start by asking what theyve noticed about their loved one or if theyve wondered why theyre behaving differently. Explaining in Simple TermsExplain dementia in straightforward, age-appropriate language. For younger children, you might explain that their loved ones brain is getting a little mixed up or isnt working as well as it used to. The Role of MetaphorsMetaphors can be powerful tools to help children grasp complex concepts. For instance, you might compare the brain to a machine thats not working properly or a light bulb thats flickering. Dealing with ReactionsNormalizing FeelingsHelp the child understand that its okay to feel a wide range of emotions, whether thats sadness, confusion, anger, or fear. These are normal reactions to significant changes. Answering QuestionsChildren are naturally curious and will likely have many questions. Answer their inquiries honestly, yet gently, using language they can comprehend. Ongoing ConversationThe explanation of dementia is not a one-time talk; its an ongoing conversation. The dialogue will evolve as the loved ones condition progresses and the childs understanding deepens.Activities for UnderstandingEducational ResourcesThere are numerous childrens books, videos, and online resources specifically designed to help children understand dementia. Interactive ActivitiesInvolve the child in memory games or role-playing exercises to simulate memory loss and promote empathy. This can help them understand what their loved one is going through. Providing Emotional SupportBe PresentEnsure youre there for the child emotionally. Let them express their feelings, reassure them about their concerns, and offer a comforting presence during this challenging time. Listen ActivelyActive listening goes a long way. Validate their thoughts, fears, and feelings, showing them that its okay to share their inner emotions.Reassure and ComfortReassure the child that, despite the changes, their loved one still cares deeply for them. Explaining ChangesBehavior ChangesInform the child that the senior might behave differently, show confusion, or forget things more often.Physical ChangesPhysical changes might occur in the loved one, such as trouble walking or talking. Make sure to prepare the child for these possible changes. Changes in RolesThe family dynamics might change as a result of the loved ones diagnosis. Explaining this shift to the child will help them understand why these changes are necessary. Building a Supportive EnvironmentMaintaining RoutineA sense of routine can provide a semblance of security and normalcy for the child during this uncertain time. Open CommunicationFoster an environment of open communication. Encourage the child to ask questions, share their feelings, and express their concerns. Inclusion in CareInclude the child in caregiving activities in ways that are age-appropriate and comfortable for them. Tips for Continued ConversationsRegular UpdatesKeep the child updated about the condition of their loved one. This will prepare them for the ongoing changes and help them understand the progression of the disease. Honesty and PatienceHonesty is paramount, but it needs to be balanced with patience. Explain that dementia is a medical condition, not a personal choice or a reflection on their relationship. Promoting EmpathyHelp the child to understand how their loved one might be feeling. This encourages empathy and patience. Additional ResourcesBooksThere are many age-appropriate books available that address dementia, which can be a helpful resource. WebsitesSeveral websites offer valuable information on understanding and coping with dementia. Support GroupsSupport groups can offer a sense of community and understanding, especially for older children and teens. Involving ProfessionalsSometimes, involving professionals like therapists or counselors can be beneficial in helping children process their feelings and better understand the situation. Dementia: A Family AffairLastly, remember to reinforce that dementia is a family affair. Everyones feelings, experiences, and contributions matter, and its okay to have good days and bad days.Final Thoughts: Recap and Next StepsHelping children understand a senior loved ones dementia diagnosis is a challenging yet vital task. Its an ongoing process, filled with numerous conversations and learning opportunities. The most important thing is to provide a supportive, open, and loving environment for the child as they navigate this difficult journey. Its also completely acceptable, and often beneficial, to seek help from professionals or use various resources to guide you along the way.We hope our guide on explaining a senior loved ones dementia diagnosis to children has been helpful. At Integracare, we extend our commitment to exceptional care across our 18 communities in Pennsylvania, Maryland, and Virginia, offering assisted living, memory care, independent living, and short-term/respite care with the same high standards. If youd like to learn more about any of our communities, please reach out to us. Were here to support you and your family throughout this journey.

The constant demands on your time.  The never-ending worries. The kind of stress that wakes you up in the middle of the night. Does finding balance while juggling the demands of work, family, and caring for aging parents sound overwhelming?  Where do you even start to look for answers?At Seniors Blue Book we understand your challenges.  We are committed to providing you with the resources you need to navigate these issues. With years of expertise in elder care and a deep understanding of the emotional and logistical elements involved, we are your go-to resource and companion on this journey.Our comprehensive directory of local resources is available 24/7 to make sure you have the knowledge and guidance to navigate the challenges of caring for your aging loved ones:- Free Printed Community Resource Guide with all the resources you need- Chat for free with a Resource Specialist on our Free Referral Line at 412-551-5951 or on our Live Chat on our website- Online educational articles and videos to walk you through key topics- A monthly newsletter to keep you up-to-date on the latest information- An Events Calendar filled with local programming and education, support groups, health fairs, and webinarsAs your trusted resource on this important journey, we will share practical tips, key questions you need to ask along the way, and offer the compassionate guidance of a supportive community so you can make informed decisions that work for you and your family.When it feels like youre carrying the weight of the world on your shoulders, remember that you are not alone. Seniors Blue Book is your trusted companion, guiding you through the complexities of caregiving, and offering a compassionate hand along the way so you can restore balance in your life.Your role as a caregiver is invaluable and you deserve the support and guidance to succeed. Seniors Blue Book is here for you, every step of the way.Subscribe to our monthly newsletter today and make sure you have these valuable resources and support for your caregiving journey by calling 412-551-5951.This article was written by Patty Toner, Director of Marketing with Seniors Blue Book Greater Pittsburgh Area.  She can be reached at Patty@SeniorsBlueBook.com.  Visit our local page at www.SBBPgh.com.

In this weeks TIME cover story, The Long Goodbye (available to subscribers here), journalist Joe Klein writes about the loss of his parents. They both suffered from dementia and died within months of each other. Through their end of life, Klein became his parents death panel. For the many other families facing the same journey, experts best advice is to prepare early. As with most difficult transitions, caring for a parent or loved at the end of life is easier if youve planned for it. Trying to make the best possible decisions about care often leads to added stress and confusion, especially if your family is already in a difficult situation. Its all pre-planning really, says Malene Smith Davis, CEO of Capital Caring, which provides palliative care and guidance for families. People really do cope well if they have a conversation about care with their families early. When families dont have the conversation, thats when theres turmoil because no one is prepared and its inevitable. Here are some tips for making end-of-life care easier to handle: Keep communication open. Have the conversation early. Make sure family members designate who they want as their health care agent if they cannot make medical decisions on their own and need someone to speak on their behalf. The last place you want to have a conversation about who will take over as a health care agent is in an emergency, says Paul Malley, president of Aging With Dignity, a Florida-based advocacy group for terminally ill patients. This can be the adult child or the parents best friend perhaps. There needs to be a conversation about everything from what medical treatments the loved one wants to how they feel about life support. The fewer surprises the better. Malley recommends opening the conversation to the entire family. So often when parents are older or have a serious diagnosis, we put them in the hot seat and say, O.K., Mom and Dad, here are a list of questions you need to answer. Instead, bring the whole family together. Even college kids can tell their families what they want in an emergency. That way the whole family can think back and remember everyones wishes, he says. Involve your doctor. I think its really important that when these medical decisions are made, the family and the doctor are present, says Carol Levine, director of the Families and Healthcare Project at United Hospital Fund. Not all doctors are comfortable talking about end-of-life kinds of issues. Involving the doctor in conversations about emergency care can alleviate tension when treatment options are discussed. Get it in writing. Its not enough to just have a conversation once and not talk about it again and its also not enough to fill out legal documents and never discuss wishes with family members, says Malley. Both need to be done.  Aging with Dignity has created Five Wishes, a living will that is legal in 42 states and has been translated in 26 languages. The document allows families to let care providers know who they want to make health-care decisions, what medical treatments they want or dont want, and what they want loved ones to know. Here are some other documents the National Institute on Aging recommends for everyone:  Living will: records a persons wishes for medical treatment near the end of life  Durable power of attorney for health care: designates a person, sometimes called an agent or proxy, to make health care decisions when the person can no longer do so  Do-not-resuscitate (DNR) order: instructs health care professionals not to perform cardiopulmonary resuscitation if a persons heart stops or if he or she stops breathing. A DNR order is signed by a doctor and put in a persons medical chart  Will: indicates how a persons assets and estate will be distributed upon death  Durable power of attorney for finances: names someone to make financial decisions when the person no longer can. It can help terminally ill people and their families avoid court actions that may take away control of financial affairs  Living trust: provides instructions about the persons estate and appoints someone, often referred to as the trustee, to hold the title to property and funds for the beneficiaries. The trustee follows these instructions after the person can no longer manage his or her affairs Another document to consider is a physician orders for life-sustaining treatment (POLST) form. It details what the patient wants in terms of medical treatment including CPR, feeding tubes and medical interventions if the patient is not breathing or is without a pulse. The form is signed by both the physician and health proxy. Not every state has a POLST program, but here are some samples. Doctors feel compelled to treat, no matter what, most of the time, says Carolyn Rosenblatt, founder of AgingParents.com, a resource for people caring for aging loved ones. They are also afraid of getting sued for hastening death. The form protects them by giving them immunity. One would hope that they could then go about decision making with more common sense. Recognize that you might not be the best person to take over. The person who becomes the health care proxy needs to be comfortable with that, says Levine. Being that person means making very hard decisions at a certain point. It is better to know if you can handle it ahead of time so someone else can take on the role if need be. Experts recommend siblings also talk to one another early about how to divide responsibilities to avoid conflict later. Talk about hospice care early. Hospice care provides medical treatment, emotional support and spiritual resources for people who are in the last stages of a terminal illness. I often see people who get into hospice care and wonder why they didnt hear about it sooner, says Davis. In many cases, that may be because people see hospice as giving up though, actually, people who receive palliative care at the end of life may live longer than those who continue with aggressive, life-saving interventions. Also, hospice can be a difficult topic for doctors to bring up to their patients. Davis recommends talking about hospice care with your family early, in order have care for the longest time possible. Hospice is a Medicare program and many state Medicaid plans and private health insurance plans pay for it as well. Talk about it early because although we all see ourselves dying in old age, its healthier to bring it up just in case. That way, it can be about your own personal wishes as well as the wishes of your loved one, says Davis. 

When you go into a nursing home and want Medicaid to pay the bill, you must be below the governments asset thresholds. Unfortunately, you essentially must go broke before the government will help pay for your care.  When someone with assets goes into a nursing home, they must pay privately for care or take other legitimate actions to get the countable assets low enough for eligibility. The process of decreasing assets to become eligible for benefits is called Medicaid Spend Down. This is not a Do-It-Yourself project.Unfortunately, the Medicaid eligibility rules are extremely complex. Many families make mistakes during this process and end up losing their hard-earned assets. Other families are too fearful to take any action at all. They simply use up all their resources on care.The proper approach is to get competent legal advice on what steps a Medicaid applicant is allowed to take according to the rules. Simply stated, if you follow Medicaids rules, there may be legitimate strategies to protect assets. If you break their rules it will cost your family substantial funds.Certified Elder Law Attorneys can help your family understand the governments rules. Perhaps more importantly, they also know some exceptions to the rules. A good elder law attorney guides you through the spend down process and helps you file the Medicaid application. Then, if necessary, the attorney will contend with Medicaid on your behalf.If you have a loved one paying privately for a nursing home, give us a call at (724) 564-6615.