Newly Diagnosed Dementia Family Support Seminar

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An informative seminar for families who are struggling with a loved one’s Alzheimer’s or related dementia.

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  • Alzheimer's disease is the most common form of dementia in older persons accounting for about 75% of cases.It is important to understand the different types of dementia because different dementias have different characteristics, and family members need to know what to expect.
  • Accounts for about 60% of casesTrouble remembering names and recent eventsApathy and depression are often symptoms that occur early on. Later symptoms may include impaired judgment, disorientation, confusion, behavior changes and difficulty speaking, swallowing and walking
  • About 20% of cases are vascular dementia develops when impaired blood flow to parts of the brain deprives cells of oxygen.Previously known as multi-infarct or post-stroke dementia, vascular dementia is the second most common dementia after Alzheimer's disease.Initial symptoms are more often impaired judgment and inability to plan steps necessary for task completion, instead of memory loss such as with Alzheimer’s diseaseThe location of the brain injury determines how the individual's thinking and physical functioning are affected.
  • Mixed dementia is most commonly diagnosed during an autopsyCharacteristics of more than one type of dementia occur at the same time in the brain.Mixed dementia symptoms will vary depending on the types of brain changes involved and the brain regions affected.Different combinations of dementias will have different symptoms
  • Accounts for about 10% of casesMost people with DLB have no family history of itLewy bodies are abnormal clumps of a protein called alpha-synuclein. When they develop in the brain cortex, dementia can result.Associated with excessive daytime drowsiness, profound visual hallucinations, movement symptoms and a lack of facial expressions or outward emotions.Sleep disturbances, muscle rigidity or other parkinsonian movement features also occur
  • in the brain's frontal lobes (the areas behind your forehead) or its temporal lobes (the regions behind your ears).rare disorder that affects the frontal lobes and the temporal lobes of the brain.Primary progressive aphasiaTypical symptoms include changes in personality and behavior and difficulty with language. Apathy commonly occursMemory is one of the last things to goImpulsive, lack social appropriateness People with FTP generally develop symptoms at a younger age (about 60 years old) and survive for fewer years than those with Alzheimer's
  • Normal functionMay appear to be experiencing normal age-related changesEarly-stage Alzheimer’s can be diagnosed in some individuals at this stageMild or early stage Alzheimer'sModerate or mid-stage Alzheimer’s diseaseModerately severe or mid-stage Alzheimer’s diseaseSevere or late stage Alzheimer’s disease
  • Early: Dementia does run in some families, particularly in early onset cases in which someone gets the disease well before the age of 65. Fortunately, these devastating cases represent less than 5 percent of all diagnoses. Late: If you have a relative whose Dementia begins well after the age of 65, you probably only have a slight increase in risk, if any. This is good news for most family members, since late-onset dementia is by far the most common form of the disease.
  • Although you may be afraid that it will devastate your loved one, even patients with dementia deserve to hear the truth.Many people will actually find it comforting to finally understand the truth about their memory loss and the changes they’re going through. Typically, they already know something is wrong, and it helps to identify what the cause is. Keeping the diagnosis secret will make it very difficult to formulate a game plan for success.
  • Dementia impacts memory, reasoning and language. It’s hard for the person with dementia to understand what we ask of them. The first thing we must do when attempting to turn a no into a yes is to ask ourselves whether our loved one would have said yes to this question years ago. If this is something your loved one would have said “yes” to before the diagnosis, these are the next steps to take:
  • Use encouragement and be a leaderOnce you get the ball rolling, the person with dementia often goes along.With patience and compassion, you can turn that no into a yes!
  • When the Alzheimer’s Association informally asked patients what they most want when dealing with a new diagnosis, the most common response was… bullet point #1The only problem with the idea of Alzheimer’s and Dementia patients coping together is that most Alzheimer’s support groups are actually for caregivers instead of people who are living with dementia. However, recently there are support groups for the dementia patients themselves popping up all around the United States. The Wild Bunch is a group that was formed in 2010. The group consists of six couples who were committed to learning about the disease and themselves from each other. When the group was first founded, everyone had different diagnoses but were all towards the beginning stages of dementia and dementia related illnesses. Unlike other similar groups, the members of this group stayed constant even when people advanced in stages and became more reserved. Although sometimes the conversation becomes sober and more serious, the main topic of conversation is upbeat. The appeal of a group like the Wild Bunch is the fact that anyone can create a group like it. One of the most important lessons learned by a caregiver of one of the Wild Bunch member was that you shouldn’t exclude people with Alzheimer’s from your life. The most hurtful thing that can happen to a person with Alzheimer’s is having the people they love turn away from them because they don’t know how to handle the disease. Another good thing about forming a group of people voluntarily is that the people that will surround your loved one all want to be there and want to make friends. It will remain a more positive environment instead of being around people who are angry and have a “poor me” mentality. Caregivers can also benefit from being involved in these groups. Many times the caregiver will learn to be more mellow, patient, and understanding because the other couples will influence a more accepting, embracing way of life. Staying connected with other people and combating loneliness is extremely important and can delay the progress through the stages of the disease.
  • This can be one of the toughest parts of caring for a loved one with dementia. You will dedicate all of your time to them, only to be accused of stealing their purse or wallet. Don’t take it personally: The forgetfulness can cause suspiciousness and because you are the only person around them, they blame you. Mistaken identitycan be caused by forgetfulness. As tough or painful as it may be, your mother may not remember what her husband, daughter, or son look like, so she no longer recognizes them. Or, forgetful and confused, he may think he is 40 years old, not 80, and so may mistake his grandson for his son.However sometimes delusions are just downright confusing and you can’t comprehend where they stemmed from. This can be painful and frightening for both you and your loved one.
  • Bullet point #1: Just remember that this person has a disease and the disease is at work, not your loved one.Bullet point #2: “I’m so sorry your wallet is missing dad, I understand why you’re upset and I’m glad to help you look for it. What color is it?” You have acknowledged their concern instead of dismissing it, which would just cause frustration. Bullet point #3: Arguing will not help. Your loved one believes this to be the truth, and this is the reality that they are living in. Try to diffuse the situation, don’t rebuttal. Bullet point #4: Use your sense of humor. Try saying something like “Oh hunny, you’re so funny! I know I have aged and may look like your mom, but I’m your beloved sister!” Or try something gentle and calm by saying, “It’s me, Amanda, your wife, sweety.” This will prevent embarrassment and help maintain your loved one’s dignity. Decreasing frustration is also a plus.Bullet point #5: Let some time pass, help them look for their missing wallet… walk around with them… change the subject. As time goes on, the situation will diffuse itself. Bullet point #6: If your loved one with Alzheimer's begins hallucinating, it's important to have a medical evaluation to rule out other possible causes and to determine if medication is needed.
  • People with dementia can become confused about what time it is, where they are, what year it is… so they become nervous  they may believe they’re missing work, or that the bathroom is outside instead of around the corner. The dementia can also cause them to be fearful. They may not remember where they are so they could become frightened and try to flee to find a safer place.
  • Put deadbolts high up on doors and out of reach. Put a sign on the bathroom door or leave the light on at night if the family member is looking for the bathroom. Alarm doors and windows, or consider investing in an alarmed mat that goes off when someone gets out of bed.A person may wander off in the morning thinking it’s time to go to work or school. Over-stimulation or worry about a friend, family member, or a pet may be a cause. For example, if someone was always worried about feeding their animals, they could be reassured that the pets were being taken care of in order to calm someone down.Carefully plan outings. If your family member wanders, don’t go to places with large groups. Take an extra helper along if possible. Choose places with family-friendly/uni-sex bathrooms.Plan for the worst. Have extra copies of photographs of your family member to give to first responders. Keep track of the clothes he or she is wearing.
  • Never talk about them in their presence as though they aren’t there. Encourage caregivers to keep them well groomed, neatly dressed and clean.A loving shoulder rub or hand massage can be reassuring, human connection is important and will keep your loved one knowing that they are valuedTake care of yourself. If you aren’t taking care of yourself, you will be unable to take care of your loved one. Seek out a support group or counselor to share your feelings of loss and obtain necessary support. Try to make time to exercise, eat well and spend time with family and friends.In late-stage dementia, you loved one is not able to let you know in words when they are in pain. If the person cries out, grimaces when touched, or shows other signs of pain, talk to your physician about appropriate medications and other solutions. Watch for skin tears or bruises. Consult with a physical therapist about chair exercises or other simple stretches that can help keep them limber if they are able.When possible, take the person outside to get some fresh air and sunshine, and to experience the beauty of nature. Use a wheelchair if needed. Going outside is sensory, spiritual and life-affirming. The person will likely enjoy feeling the sun’s warmth and seeing flowers, birds, and neighborhood children.Take advantage of hospice care. Hospice offers wonderful services for home-bound individuals in the late stages of dementia, including assistance with nursing and medication, help with bathing, all-important respite, and spiritual support for the patient and his or her family.
  • Example of a program: “The focus of Namaste Care is to engage people with advanced dementia with a “loving touch” in an environment that nurtures and stimulates the senses. The environment is carefully created with scents of lavender, soft music, nature scenes, hydration and nurturing for attention to the senses of smell, touch, taste, hearing and vision.”  (HCR ManorCare, 2014)
  • Newly Diagnosed Dementia Family Support Seminar

    1. 1. Coping with the diagnosis An informative seminar for families who are struggling with a loved one’s Alzheimer’s or related dementia Created by: Amanda Kanners
    2. 2. The Guide to Coping with Alzheimer’s & dementia  What are the types of dementia?  What are the stages of Alzheimer’s disease?  Is dementia genetically inherited?  How do I talk to them about their diagnosis?  Why is “no” their new favorite word and how can I turn it into a yes?  Who should they spend time with?  How do I deal with delusions and hallucinations?  How should I manage wandering?  How can I help someone in late stage dementia?
    3. 3. An accurate diagnosis is key Knowledge of the proper diagnosis can help family members better understand and cope with their situation. Photo by: 45th Ward Mom (c) 2014 Photo by: Anglicanmainstream.net
    4. 4. First off… what is dementia? “Dementia is an umbrella term for any disease or disorder that will cause problems with brain functioning such as confusion, memory loss, or loss of problem solving ability.” (Home Instead, 2014) Dementia Lewy Body
    5. 5. Alzheimer’s Disease  Most common type of dementia  Symptoms develop slowly, getting worse over time  Early-stage symptoms  Later-stage symptoms
    6. 6. Vascular dementia  Second most common type of dementia  Different causes than Alzheimer’s Disease  Different onset of symptoms than Alzheimer’s Disease
    7. 7. Mixed dementia  Unknown prevalence  More than one type of dementia occur at the same time in the brain  Causes and symptoms depend on the types of dementia that are occurring simultaneously  Most common combination of Mixed dementia
    8. 8. Dementia with Lewy Bodies Third most common type of dementia Cause currently unknown Common symptoms Photo from: Huffpost Healthy Living
    9. 9. Frontotemporal dementia  Most common type of dementia in individuals under the age of 65  Early onset  Very different early-stage symptoms  Family history Photo from: frontemporaldementia.info
    10. 10. What are the stages of Alzheimer’s disease? Photo from Net Resources International
    11. 11. Is dementia inherited? Don’t panic! Not all types of dementia are genetic, other factors can actually be greater contributors. Early-onset dementia is more inheritable Later-onset dementia is less inheritable Photo from colormerouge.com
    12. 12. “Whatever you do, don’t tell mom about her Alzheimer’s disease!” Most physicians and specialists believe it is a patient’s right to be fully informed about their situation. Photo from natcom.org
    13. 13. Ok… so how do I talk to them about their diagnosis? 1. Research the type of dementia they have been diagnosed with. 2. Allow the physician to explain the situation to your loved one. They are trained for this and have most likely done it many times. 3. Be empathetic, upbeat, and supportive. 4. Answer any questions your loved one asks, but stress the positive 5. Assure them that you will be traveling the journey with them.
    14. 14. How can I turn a NO into a YES? When we are asked to do something we don’t understand or we don’t feel comfortable with, how do we respond? Photo from karengately.wordpress.com
    15. 15. Third time’s the charm  Try three times in three different ways 1. Ask them in the same way that you have always asked them. “Dad, it is a beautiful day outside. Let’s go outside and watch the birds.” 2. Use some information from their life story to make a more personal request. “Dad, let’s go outside and feed the birds. I need you to help me fill your bird feeder, and I know you are the best at it!” 3. Take their hand and use visual cues. Add an incentive or a favorite reward to increase likelihood of a yes. “Dad, it is really beautiful outside today. Let’s go outside and bird watch. [pause] I’d really appreciate your help, and afterwards we can go get some chocolate ice cream.”
    16. 16. Coping Together  “We want to be with other people who have the disease, people like us.” (Chicago Tribune, 2014.)  Supper clubs, Wild Bunch, and other support groups. Members of the Wild Bunch, formed in 2010. Photo from the Chicago Tribune
    17. 17. Delusional, suspicious and hallucinating  Delusions: firmly held beliefs in things that are not actually real. Although their delusions are not grounded in reality, the situations are very real to the person with dementia.  Suspicions: can stem from delusions and cause mistrust in those around them. This often leads to accusations of theft, infidelity or other types of improper behavior.  Hallucinations: the person with dementia may see, hear, smell, taste or feel something that is not actually there. These are false perceptions of objects or events that do really exist involving the senses. Photos from Alzheimer’s Association
    18. 18. “The cleaning lady stole my wallet” Accusations  Forgetfulness “I don’t know who you are” Mistaken Identity  Forgetfulness “I just had my 35th birthday last week” Flashbacks  Forgetfulness “My neighbor keeps stealing my petunias” And then some are just mysterious…
    19. 19. How do I react? Do not take it personally! Follow these tips:  Do not overreact or get upset at your family member.  Acknowledge their concern and ask questions to gain more information about the concern.  Do not argue. Remember that this is their reality.  With mistaken identity you can try offering gentle cues.  Time heals all.  Hallucinations are a slightly different story.
    20. 20. Where did she wander to now? “I just turned my back for a minute and mom had wandered off. She usually walks so slowly, but when she wanted to get away she became a track star!” (Home Instead Inc., 2014) 6 in 10 persons with dementia wander… Why? Forgetfulness “What time is it? Am I missing work?” Fear “Where am I? This place isn’t safe.”
    21. 21. How can I keep them safe?  Make your home safe.  Recognize patterns and triggers.  Know your loved one’s wandering habits and plan outings based on them.  Always plan for the worst. Consider registering your loved one with MedicAlert + Safe Return
    22. 22. How can I help my loved one who is in a later stage?  Always preserve your loved one’s dignity  Gentle physical contact  Take care of yourself Photo from Bath-Knight Blog  Manage pain  Spend time outside when possible  Hospice care
    23. 23. Stimulate the senses Engaging the senses engages the brain and keeps your loved one roused Taste: hydration, food Vision: nature scenes Hearing: soft music Touch: animal therapy, warm towels, soft massage Smell: aroma therapy Photo from newyorktimes.com
    24. 24. References: Alzheimer’s Association. (2014). Seven stages of Alzheimer’s. Retrieved on January 28, 2014 from: http://www.alz.org/alzheimers_disease_stages_of_ alzheimers.asp Graham, J. (2014). Alzheimer’s supper club. Chicago Tribune: Health & Family. Printed on Wednesday, January 29, 2014. (Print). HCR ManorCare. (2014). Arden Courts. Retrieved on February 3, 2014 from: http://www.arden-courts.com Home Instead Inc. (2014). Retrieved on January 28, 2014 from: http:// www.helpforalzheimers families.com Net Resources International. (2012). What are the stages of Alzheimer’s? Retrieved on January 29, 2014 from: http://www.drugdevelopmenttechnology.com/projects/semagacestat/semagacestat2.html
    25. 25. Photo references: 45th Ward Mom Frontotemporal Dementia.info Alzheimer’s Association Huffpost Healthy Living Anglican Mainstream In Her Chucks Bath-Knight Blog Karen Gately Wordpress Chicago Tribune National Communication Association Clip Art CNN Health Color Me Rouge Net Resources International New York Times

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