Hello everyone! Today, we want to talk to you a little bit about challenges of the different phases of the disease and uncommon situations, ethical dilemmas, legal aspects. Dementia can lead to behaviour changes, which may cause distress for the person with dementia and place added pressure on family and carers. Some changed behaviours can be difficult to deal with. This can be distressing for those who care for them. Changes in behaviour may include aggression, distress, agitation, hallucinations and delusions, restlessness, hoarding, repeating the same question or activity over and over again, wandering, sleep disturbance, eating problems. The severity may be different for each person in different stages of dementia. Potential causes for behavioral challenges: * Physical pain or discomfort: Illnesses, medication, hunger or thirst. * Overstimulation: Loud noises or a busy environment. * Unfamiliar surroundings: New places or the inability to recognize home. * Complicated tasks: Difficulty with activities or chores. * Frustrating interactions: Inability to communicate effectively Common Dementıa-Related Behavıors Aggression People with Alzheimer's disease may become aggressive as the disease gets worse. Aggression may include shouting or screaming, verbal abuse, and sometimes physical abuse. Aggression may happen for no reason. When they happen, trying to find the cause is important. If you deal with the causes, the behavior may stop. How to Respond : Rule out pain as the cause of the behavior. Pain can trigger aggressive behavior for a person with dementia.Try to identify the immediate cause. Think about what happened right before, which may have triggered the behavior. Focus on feelings, not facts. Look for the feelings behind the words or actions.Try not to get upset. Be positive and reassuring. Speak slowly in a soft tone. Limit distractions. Examine the person's surroundings and adapt them to avoid other similar situations. Try a relaxing activity. Use music, massage or exercise to help soothe the person.Shift the focus to another activity. If a situation or activity causes an aggressive response, try something different. Speak calmly. Using a calm tone, try to reassure the person. Take a break. If the person is in a safe environment and you are able, walk away and take a moment for yourself. Ensure safety. Make sure you and the person are safe. If the person is unable to calm down, seek assistance from others. Forgetfulness and Confusıon A person with Alzheimer's disease may not recognize familiar people, places or things. He or she may forget relationships, call family members by other names or become confused about where home is. The purpose of common items, such as a pen or fork, may also be forgotten. How To Respond: Stay calm. Respond with a brief explanation. Don't overwhelm the person with complex responses. Clarify with a simple explanation. Show photos and other reminders. Use photographs and other items to remind the person of important relationships and places. Offer corrections as suggestions. Avoid explanations that sound like scolding. Try not to take it personally. Alzheimer's causes forgetfulness, but your support and understanding will continue to be appreciated. New Suspicions Memory loss and confusion may cause a person with Alzheimer's to perceive things in new and unusual ways. Individuals may become suspicious of those around them, even accusing others of theft, infidelity or other improper behavior. Sometimes a person with the disease may misinterpret what he or she sees and hears. How to Respond: Listen to what is troubling the person and try to be understanding. Don't argue or try to convince. Allow the individual to express his or her ideas and acknowledge what was said. Offer a simple answer. Share your thoughts, but keep it simple. Lengthy explanations can be overwhelming. Switch the focus to another activity. Engage the individual in an activity or ask for help with a chore. Duplicate any lost items. If the person often searches for a specific item, have several available. For example, if the individual is always looking for his or her wallet, purchase two of the same kind. Check hearing and vision impairment. People with dementia often have physical difficulties including hearing and sight loss that can also cause problems with misinterpretation. Hoarding People with dementia may often appear driven to search for something that they believe is missing, and to hoard things for safekeeping. What to try: Learn the person's usual hiding places and check there first for missing items. Support them to be in activities like orginizing the drawers. Use reminders to recognize the house, as an inability to recognize the environment may be adding to the problem of hoarding Repetıtıve Actions A person with Alzheimer's disease may do or say something over and over again - like repeating a word, question or activity. These actions are rarely harmful, but can be stressful for the caregiver. What Can Be Done In The Face Of Repetition/Repetitive Behaviors? First, the situation causing the repetitive behavior should be determined. The focus should be on how the person with dementia feels rather than reacting to what they are doing. His action or behavior can be turned into an activity. If the sick individual is rubbing their hand on the table, they may be given a cloth and asked for help in dusting. Be calm, patient and determined. The sick individual should be comforted with a calm tone of voice and a soft touch. S/he can be distracted when explaining doesn't work. Activities such as walking and doing something he loves can be helpful. The question asked by the person should be answered as if it were the first time, even if it has to be repeated several times. How to Respond : Look for a reason. Try to find out if there is a specific cause ortrigger for the repetitive behavior. Focus on the emotion. Rather than reacting to what the person is doing, respond to how he or she is feeling. Stay calm and be patient. Reassure the person with a calm voice and gentle touch. Engage the person in an activity. The individual may simply be bored and need a distraction. Engage the person in an activity like taking a walk or working on a puzzle. Provide an answer. Give the person the answer that he or she is looking for, even if you have to repeat it severaltimes. Wanderıng and Getting Lost It's common for a person with Alzheimer's to wander and become lost, and it can happen at any stage of the disease. As the disease progresses, the person with dementia will need increased supervision. At some point, it will no longer be safe to leave him or her alone. How to Respond: Encourage activity. Keeping the person with Alzheimer's active and engaged can help discourage wandering behavior by reducing anxiety and restlessness. Involve the person in chores such as doingdishes, folding laundry or preparing dinner. If the person shows interest in getting out of the house, consider safe outdoor activities such as walking with you or gardening. Make the home safe. Install deadbolt or slide-bolt locks on exterior doors and limit access to potentially dangerous areas within the home. Inform people around you that the patient has dementia and s/he may wander/run away. Use a medical alert bracelet to alert health professionals of your medical conditions in the case that they're unable to tell them. Trouble With Sleep People with dementia may experience changes in their sleep schedule or have problems sleeping. Although the exact cause is unknown, sleep changes result from the disease's impact on the brain. How To Respond: Make a comfortable environment. The sleeping area should be at a comfortable temperature. Use nightlights and take other steps to keep the person safe, such as installing appropriate door and window locks.Maintain a schedule as much as possible, encourage a regular routine of waking up, meals and going to bed. Manage naps. If the person has trouble sleeping at night, it can be helpful to limit daytime naps. Try to include some type of exercise, as appropriate for the person, during the day.Physical activity may promote restfulness at night. Avoid stimulants. Reduce or avoid alcohol, caffeine and nicotine, which can all affect ability to sleep. Discourage watching television during periods of wakefulness at night, as it can be stimulating. Discuss sleep disturbances with a doctor to help identify causes and possible solutions. Eating And Drinking for a Person With Dementia A person with dementia may find eating difficult. Loss of appetite, loss of memory and problems with judgement can cause difficulties with food, eating and nutrition. The person may forget how to chew and swallow, or may be distracted by their environment. Abnormal eating behaviors, eating problems, and dietary changes are present in most people with dementia, especially in the later stages of the condition. Environmental modifications: Moving the patient to the dining room rather than the chair or bed where he/she sits all day will help him/her remember that he/she needs to eat. If there is no chance to eat in a separate room, the presence of a serving tray, cutlery will also help remind the patient to eat. The use of coloured crockery for people with dementia may support their perceptual difficulties; the importance of the colour is that it is in contrast to the food and table. In addition to contrasting coloured crockery, good lighting in dining rooms or during the dining room experience is essential. The dining room environment could be enhanced with relaxing music. The dining environment where possible should include tables where residents/patients may eat together and for optimal social interaction tables for people are recommended. Effective interventions include flexible meal times, providing food high in energy, modified diets based on needs and wishes of the individual patient,snacks, bite-sized foods that are easy to pick up, small portions and regular diet, offering one food item at a time, and dietary supplements. Keep in mind a person's past history with food and be flexible with food preferences. In addition to a healthy diet, insufficient physical activity may lead to loss of appetite. Make sure dentures fit and visit the dentist regularly. As the disease progresses, loss of appetite and weight loss may become concerns. In such cases, consult a doctor if the person with dementia experiences significant weight loss. Personal Care and Hygiene It is quite common for to help a person with dementia manage their hygiene. As the disease progresses, their ability to use items such as combs and toothbrushes may also decrease.They may forget what these items are and what they are used for. Memory loss can affect a person's ability to remember how to do tasks, as well as whether to do them. They may lose interest in, personal grooming. They may neglect basic activities such as bathing and changing their clothes. As a person's dementia progresses, they will need more help with everyday activities such as dressing.washing, and toileting. Some practical and simple solutions can be developed to help the patient's dressing problems.When helping a person with dementia, choose comfortable clothing rather than items with buttons, zips and fasteners. Removing excess and unsuitable clothes am be useful. Explain them what will you do about personal hygiene step by step and continue with your routines. Routines help bathing and showering safer and easier. Toileting and Dementia Another problem in Alzheimer's patients is incontinence of the bladder and bowels particularly in the middle and late stages. The first and most important step is to determine the possible causes. If the cause is not medical and treatable, some practical and simple solutions can be developed. For example if the patient has enürezis noctuna you can limit the fluid intake before bedtime. If urinary incontinence is permanent, provide to go to the toilet regularly in daytime. You can consider using padded undergarments or adult briefs. On the other hand, I would like to mention a rarely mentioned issue that has a strong impact on the lives of individuals with dementia and their relatives. Explaining Dementia to Children and Young People When a close family member develops dementia, it is likely that every member of the family will be trying to cope with their own feelings. Offering clear explanations and plenty of reassurance that people can live well with dementia can help children and young people to adjust and manage their feelings. They may need encouragement to ask questions. Listen to what they say so you can understand what is worrying them.It is very important to encourage your children to go on their lives. Let the child or young person know that, if it's possible, simply being with the person with dementia and showing them love and affection is one of the most important things they can do. Try to make sure that the time they spend with the person is pleasurable. Activities could include going for a walk together, playing games, sorting objects, listening to music or making a scrapbook of past events. Take photographs of the child or young person together with the person with dementia, to remind you all that there can be good times. The other important point is driving, Driving and dementia For people in the early stages of Alzheimer's, people can still drive.However, over time, dementia affects the skills needed for safe driving. The condition is important both for the person's safety and the safety of others. Signs of unsafe driving include driving too slowly, making errors at intersections, making slow or poor decisions in traffic, forgetting how to locate familiar places, failing to observe traffic signs. Most drivers with Alzheimer's disease will need to stop driving in the middle stage of dementia. Giving up driving is not always an easy decision for a person with dementia loving driving. Suggest ways for the person to manage their daily life without driving. Provide using the car by someone who is loved, instead of person with dementia and provide transportation. If the person still insists on, consider these last-resort preventive strategies: Control key access. Keep keys out of sight. If the person with dementia wants to keep a set of keys, offer keys that won't start the vehicle. Disable the vehicle. Remove a battery cable to prevent the car from starting. If you can make do without the vehicle, consider selling it. Now, I would like to mention about Ethical Dilemmas Individuals with dementia, family members, professionals, caregivers, impact of caring on society bring many ethical dilemmas and ethical violations. Each person has their own identity and so it is important to always maintain their dignity and self-esteem.Progression of dementia will vary from person to person and each will experience dementia in a different way That's why 'One size fits all' does not work when it comes to providing care and support people with dementia. When evaluating ethical issues, it is advised that prejudice and discrimination against people be considered. Communication Barriers That Get in The Way of Ethical Behavior. Speaking for a person with dementia, without letting him/her speak up for himself/herself, a threatening ,despising, judging or blaming way of talking, patronising them, not allowing them to process the information and work out their response, making assumptions, and to believe we are right about the assumptions, avoiding being honest and truthful as honesty often appears to conflict with, thinking or assuming others know what you are thinking and feeling. During the middle and late stages of AD, patients may lose the capacity to determine and express what they want. To maximally respect patient autonomy when they become incompetent, it is now common practice to ask these patients during the earlier stages of AD what they want done and/or who will make decisions for them when they are no longer able make these decisions themselves. Problems that occur in the middle and later stages of AD primarily involve conflicts between the values of respecting patient autonomy maximally and paternalistically trying to protect them. These problems include whether the AD patient's caregivers should try to influence the patient in ways they don't disclose to get him or her to do what they want, whether they should withhold information because it may be highly upsetting to the patient, and, especially during the later stages of AD, whether caregivers should outright lie to the patient to avoid causing psychological stress. Common examples of ethical dilemma include informing and explaining dementia diagnosis, driving decisions, safety in the home, enacting the power of attorney, consent for treatment and clinical trials, hiding medications in food, sexual activity, therapeuticlying, genetic testing for apolipoprotein-e (apoe) gene, blood tests that predict the development of alzheimer's, administering antipsychotic medications, stopping dementia medications, end of life decisions It would be better to use checklist for reflecting on ethical dilemmas and ethically challenging situations. Finally , I would like to talk about Legal Aspects Many people are unprepared to deal with the legal and financial consequences of a serious illness such as Alzheimer's disease.It is important for families to designate legal and financial planning arrangements following the diagnosis of dementia. Alzheimer's disease typically progresses slowly in three general stages: early, middle and late (sometimes referred to as mild, moderate and severe in a medical context). Each has its own specific signs and symptoms. Mild cognitive impairment (MCI): At this stage, a person may need only prompting or a little help. Taking measures to improve safety becomes vital as a part of labor and social security law. Many forms of planning can help the person and his or her family address current issues and plan for next steps.Moderate cognitive impairment: There are some impairments in cognitive abilities and behavioral changes. Your loved one is unable to live independently and supervision will be required. There are increased difficulty in legal and financial issues. Severe cognitive impairment: The symptoms progress to the point that it becomes difficult to live alone or take care of oneself. People with dementia and their families need supports and services on legal matters as well as other services in community. Legal issues of people living with dementia, the circumstances under which the person may be held liable for the acts, unlawful act and defaults are complex process. The joint roadmap to be created by the person with dementia, lawyers, family members, social workers and professionals is important for the process management. Legal, Financial, and Health Care Planning * Start discussions early. People in the early stages of the disease may be able to understand the issues, but they may also be defensive, frustrated, and/or emotionally unable to deal with difficult questions. The person may even be in denial or not ready to face their diagnosis. This is normal. Be patient and seek outside help from a lawyer or geriatric care manager if needed. * Gather important papers. When an emergency arises or when the person with dementia can no longer manage their own affairs, family members or a proxy will need access to important papers, such as a living will or financial documents. To make sure the wishes of the person with dementia are followed, put important papers in a secure place and provide copies to family members or another trusted person. A lawyer can keep a set of the papers as well. * Review plans over time. Changes in personal situations - such as a divorce, relocation, or death in the family - and in state laws can affect how legal documents are prepared and maintained. Review plans regularly, and update documents as needed. * Reduce anxiety about funeral and burial arrangements. Advance planning for the funeral and burial can provide a sense of peace and reduce anxiety for both the person with dementia as well as his or her family. * Private medical insurance.Read health insurance policies on chronic disease/ progressive disorders and diseases. Check if the health insurance covers or consider what it covers in detail.If you are unsure about the language or terminology, contact the personnel department or your financial planner. * A disability benefit. If you're living with dementia, you may be entitled to a disability benefit. you should contact official organisationsto claim the benefits to be provided by the state, you should contact official organisations. * Watch for signs of money problems - Problems managing money may be one of the first noticeable signs of dementia. To provide support, while also respecting the person's independence, a family member or trusted friend can help. * Establish consent to manage finances - As the disease progresses, a family member or trustee can take additional steps. Consider being named as a legal proxy to access and manage the person's financial affairs to prevent serious problems, * Protect against scams or fraud We hope that the chapter has been useful to you, and also hoping that these tips can help you cope and get the support you need. If you are interested in obtaining more information, you can consult our project website at: http://demcare.hcilab.es/ . Until the next episode!