Guide: How to Care for Someone with Alzheimer s or Dementia Your comprehensive guide on caring for loved ones with Alzheimer s or Dementia.
How to Care for Someone wtih Alzheimer s or Dementia 1 Early Stages of Memory Loss Care Your New Role: Caregiver When a loved one is diagnosed with early-stage Alzheimer s disease, it does not just affect the person with the disease, but the people around that person who love and care for them. Many new caregivers find difficulty in getting acclimated to the role, and may not know where to go for information or support. Those who are beginning to care for someone with Alzheimer s may also feel nervous about what will happen as the disease progresses and worsens, and if they will have the strength to remain a caregiver. It is important to know, that as a new caregiver you are never alone. It is okay to ask for help from family, friends, and neighbors. Reaching out to those who are also caretakers for someone with Alzheimer s disease can help Finding a Balance When someone is diagnosed with early-stage dementia, they typically can still perform day-to-day activities such as bathing, dressing, and eating. They may even still have the ability to exercise, drive, or work/volunteer. As a caregiver, it is often difficult to establish how much assistance you should give to the person with the disease. Finding a balance between independence and interdependence may help both of you to cope with new strategies and routines. 2
2 Common Challenges that People Caring for a Loved One with Alzheimer s or Dementia Face Communication Understanding and being understood by someone who has Alzheimer s disease or dementia can be a huge challenge. The following tips may help to improve communication between the both of you. Use short sentences with simple words or phrases and use a gentle, calm tone of voice. Never talk to someone with Alzheimer s or dementia as if they were a baby or talk about the person as if they are not there or cannot hear you. While talking to them, limit distractions by turning the TV or radio off. This will help gain the person s full attention and your message will be better received. Refer to the person by their name and make sure you have their attention before speaking. Try not to interrupt the person if they are struggling to get a response together. Also allow them enough time to get a response out before starting a new thought. Always frame questions and thoughts in a positive way. Incontinence As Alzheimer s disease progresses, many of those who are affected by the disease begin to experience incontinence, or the inability to control their bladder and/or bowels. The person suffering from AD can start to feel extremely upset or frustrated when this begins to happen and can be difficult for a caregiver to deal with. The following are a few tips for caregivers who are dealing with this issue. Establish a routine for taking the person to the bathroom and follow it as closely as you can. Avoid waiting for the person to ask to use the restroom, instead take them every 2-3 hours. Respond quickly if the person is giving non-verbal signs that they have to use the restroom. Accidents will happen. Instead of getting upset and frustrated, be understanding and help the person feel as unembarrassed as possible. Limiting certain fluids in the evening, especially those with caffeine, can help reduce the risk of nighttime accidents. Before taking the person to a public area, be aware of where the restrooms are located and have the person wear clothes that are quick and easy to remove. Always pack an extra pair of clothes on the off chance of an accident happening. 3
2 Common Challenges that People Caring for a Loved One with Alzheimer s or Dementia Face (cont.) Hallucinations and Delusions People who begin to experience hallucinations and delusions are often in the later stages of Alzheimer s disease. When the person sees, hears, feels, smells, or tastes something that is not there, they are experiencing a hallucination. A delusion is a false belief from which the person cannot be dissuaded. Some tips on how to deal with those experiencing hallucinations or delusions: Hallucinations and delusions can sometimes be a sign of physical illness, so keep note of whenever the person experiences one and discuss the situation with a doctor. If the person is in the middle of experiencing a hallucination or delusion, try to provide reassurance that they are okay. Also try distracting the person with a different topic of conversation or activity. Move or get rid of anything that could be potentially harmful to the person if they begin to hallucinate. Mood Swings Dealing with a sudden angry outburst can be extremely difficult, especially if you do not know what is causing it. Try to remain calm. Understand that the person may just be frustrated with themselves because they suddenly do not understand what is going on. Never simply dismiss aggressive behavior as something that just happens when a person has Alzheimer s disease. Ask questions about why they got upset and what potentially caused it. Wandering Making sure that your loved one who suffers from Alzheimer s disease or dementia is safe is one of the most important things. Those who have AD or dementia often times have problems with wandering away from their home or caregiver. Knowing how to limit your loved one from wandering can help protect them from getting lost: Have the person wear a medical bracelet or identification card so they can be identified if they wander off and are found by someone. Many areas have programs in place that will involve the police of local EMTs if your loved one becomes lost or wanders away (Alzheimer s Association Safe Return Program.) Keep recent photos or videos of the person with AD to show police in case they become lost and you need assistance finding them. Keep a lock on any door that acts as an exit to the house. However, doors within the house leading to bedrooms and bathrooms should have their locks removed, as people with AD run the risk of locking themselves in a room and forgetting how to unlock it, thus becoming trapped. Secure or remove anything in the house that could potentially be dangerous. 4
3 Alzheimer s Bathing, Dressing and Eating Bathing Depending on the situation and stage of Alzheimer s or dementia your loved one is experiencing, bathing can either be an enjoyable and relaxing experience, or a frightening and confusing experience. Planning a bathing routine around when your loved one seems to be the most agreeable and calm can make this task easier for both you and them. Tips for bath time: Explaining step-by-step what you are going to do to your loved one will help them remain calm. Allow them to bathe themselves as much as they can, but be there in case they need any assistance. Have everything set up in the bathroom before you bring your loved one in. To reduce any safety risks, install grab bars or a bench in the shower. NEVER leave your loved one alone in the bathroom. Cleaning your loved one in a shower or bathtub may not be necessary every day; try a sponge bath. Dressing Some of the main challenges a person with AD may face surrounding dressing include: picking out what to wear, putting on or removing clothes, and difficulty maneuvering buttons and zippers. Reducing these challenges can significantly help your loved one. Start a daily dressing routine by having your loved one get dressed at around the same time every day. Allow your loved one to dress themselves as much as possible. Only intervene if they become upset or frustrated. Too many clothing options can be overwhelming, so keep their selection of outfits limited. If they seem to favor one outfit over others, consider buying multiple sets of that outfit. Most importantly, choose clothes that are comfortable, easy to get on and off, and easy to wash/care for. Clothes with elastic waistbands or Velcro enclosures help eliminate challenges with buttons and zippers. 5
3 Alzheimer s Bathing, Dressing and Eating (cont.) Eating People with Alzheimer s disease or dementia can have wide ranging food needs. Some people can experience constant hunger and the urge to eat, while some may experience little to no appetite. The following are some tips for maintaining a healthy diet: Encourage conversation and social interaction at meal time. Be patient and avoid rushing them to finish their meal. Limiting outside noise and distractions can help create a calm and relaxed environment for mealtime. Try and eat meals at the same time every day. Creating a routine for someone with AD or dementia can be extremely beneficial for everyone. Offer your loved one food that varies in taste, color, and texture, but limit their choice to a few options to prevent them from becoming overwhelmed and confused. Serving smaller portions throughout the day is better than trying to serve larger portions only twice a day. Stock the pantry with healthy snack options and make finger foods available to them. Monitor how many fluids they are consuming throughout the day to avoid dehydration. As AD progresses, so does the risk of having chewing or swallowing problems. Choose foods that are easy to consume. 6
4 Activities and Exercise Activities It can be challenging to find activities that your loved one with AD or dementia is interested in and physically capable of doing. Working with skills they already have is generally better than trying to teach them something new. Keep any activity as simple as possible and never expect too much. Break an activity down into smaller steps to help them get started. Reward or praise them after every step they complete to keep them motivated. Help or distract the person if they begin to get upset or frustrated. If you don t have enough time to participate in daily activities with your loved one, consider adult day care centers. These centers often provide a variety of stimulating activities and give you temporary relief from caregiving duties. Exercise Daily exercise can be beneficial to both the person with AD or dementia and for the caregiver. It not only improves health, but creates a meaningful activity for both of you. Find activities that you both may enjoy doing such as walking, swimming, tennis, etc. However, when planning different activities, have realistic expectations of what your loved one can physically do. Build exercise routines slowly. Stop if your loved one begins experiencing any pain or discomfort, and seek medical attention. You can also look into any exercise classes that may be offered at your local rec center. These classes are a good way of staying active and social. 7
5 Safety and Health Doctors Visits Visiting the doctor on a regular basis is important for someone who has Alzheimer s disease or dementia. When scheduling the visits, choose the time of day at which your loved one seems to be the calmest and ask the office staff what time of day the office is usually the least crowded. The following are some helpful tips for making a doctor s visit less of a hassle and more stress-free: Let the nurses and office staff know ahead of time that your loved one may be confused as a result of their AD or dementia. They may know of ways to calm the person and make them feel more comfortable. Do not give your loved one any advanced notice about the appointment. Tell them where you are going shortly before you leave and remain straight forward and positive about the visit. Bring something to eat or drink, or any type of activity that may help to distract your loved one. Ask a family member or friend to accompany you on the visit. This way you can talk to the doctor while the other person is able to sit with and watch your loved one. Driving It can be difficult to determine whether or not your loved one who suffers from AD or dementia is capable of driving. Whatever the decision, it needs to be communicated carefully and sensitively. Your loved one may be upset at the sudden loss of independence, but remind them that safety is the priority. Getting confused and lost in familiar places, ignoring traffic signs and lights, driving too fast or too slow, or getting angry and irritated while behind the wheel can all be signs that driving may no longer be safe for your loved one. Be firm, yet empathetic when you talk to your loved one about why you think it is no longer safe for them to drive. Be sensitive to their feelings about a loss of independence. However, once you make your decision, stick with it and be consistent. Do not let them drive again just because they are having a good day. Do not be afraid to ask a doctor for help when breaking the news to your loved one that they are no longer allowed to drive. Your loved one may view the doctor as a source of authority and will be more willing to stop driving under their request. 8
5 Safety and Health (cont.) Sleeping For many people who suffer Alzheimer s disease or dementia, getting into a nighttime routine can be very challenging. For caregivers, getting their loved one into bed and to stay there all night can require some advanced planning. One of the best ways to get your loved one to sleep through the night is to increase exercise during the day and limit napping. If your loved one does need to nap, try and plan it for earlier in the day rather than later in the afternoon. Create a quiet and peaceful mood as bedtime approaches by dimming the lights and playing soft music. This will help to encourage sleep. Try and develop a bedtime routine by encouraging your loved one to get ready for bed around the same time every night. Eliminate all sources of caffeine later in the day. If your loved one becomes frightened or disoriented by darkness, use soft lighting in their bedroom, bathroom, and hallways. Home Safety Creating a safe home environment can help eliminate any stressful or dangerous situations. The following are some general tips on home safety. If your loved one is known to wander from their home, install locks on all doors and windows that can be used to exit the house. However, you should remove locks from bathroom doors or other doors within the house to prevent them from accidentally locking themselves in. Use child locks on any cabinet or door that may contain cleaning supplies or any other dangerous substance. Organize medication in a locked cabinet. Also remove or secure any type of knife, lighter, or other dangerous devices. Declutter the house and attach any rugs to the ground with Velcro or double sided tape to prevent tripping/falling. Check to make sure every walkway and room has adequate lighting. Look into installing automatic shut off switches on the stove and oven. This will help prevent any fires that may start as a result of accidentally leaving the appliance on. 9
6 Tips for Daily Tasks As Alzheimer s disease or dementia progresses, your loved one will slowly lose their ability to perform daily tasks. Consider these practical tips to help them maintain a sense of independence as they become more dependent on you. Reduce Frustration Someone with Alzheimer s disease or dementia will become more agitated when they begin to become unable to do tasks that were once simple. Tips to limit some of these challenges and reduce frustration: Schedule wisely Creating a daily routine can make each day less confusing for your loved one. Plan tasks such as bathing, eating, or medical appointments when the person is the most awake and calm. However, allow some flexibility for fun and different activities each day. Take your time As the disease progresses, your loved one will begin to take longer to do things. Allow them to have frequent breaks if a task starts to become frustrating. Plan ahead and expect that things will take more time than usual. Do not hurry or rush them. Focus on Individualized Care The speed of disease progression and symptoms of Alzheimer s or dementia can vary from person to person. Tailor your caregiving techniques to what your loved one personally needs. Be aware that their actions and responses can change quickly. Involve the person Try and avoid doing everything for your loved one just so it gets done faster. Involve them in activities and allow them to be as independent as possible. Provide choices Limit the amount of options you give your loved one, but still allow them to make decisions on their own. For example, pick out two outfits for the day and have them chose one rather than having them pick out an outfit from their entire closet. Provide simple instructions A person with AD or dementia can better complete a task if instructions are given to them one step at a time. Reduce distractions Turn off the TV or radio during meal time or when they are getting ready. This will reduce any outside distractions that could cause them to move slower. 10
7 Nonverbal Communication Effectively communicating with someone who has Alzheimer s disease or dementia can be extremely difficult. The damage to their brains can affect the way they hear, process, and respond to conversation. Because of this, it is important that we adapt to new ways of communicating with our loved ones. Using facial expressions, body language, and other nonverbal communication tools can help us better convey our message. Nonverbal communication is so important because sometimes our body language does not match the words we are saying, which can confuse your loved one. Being aware of what our body language is conveying can help when trying to get a message across to someone who suffers from cognitive decline. What is nonverbal communication? Facial expressions Your face can often communicate more to someone than words can. Many facial expressions are also recognized universally such as happiness, sadness, anger, fear, surprise, and disgust. Body movements and posture Someone s mood can often be expressed by the way they are walking or the way they are holding themselves. Gestures Many people use hand gestures when they talk often to elaborate or emphasize what they are saying. Eye contact Eye contact while speaking to someone is very important. It can help you gauge how the other person is feeling or their reactions to what you are saying. Touch Touch is another way to communicate to someone without actually speaking. Gestures such as a hug, a tap on the shoulder, or a pat on the head can all communicate different things. conversation. Voice The volume of your voice and the tone you use can also convey a different message than your words. 11
7 Nonverbal Communication (cont.) Nonverbal techniques that help you connect Be patient and calm Maintaining a positive and calm attitude can help you more easily communicate with your loved one. Stay clear of any body language that may indicate anger, frustration, or impatience. If they are trying to talk but have trouble putting their thoughts into words, be patient and let them finish. Try not to prompt them or finish their sentences for them. Be aware of your voice, body, and facial expression Maintain a pleasant look on your face and try not to seem too tense, as this could cause your loved one to feel stressed and upset. Keep your tone of voice as upbeat and friendly as possible. Be consistent Avoid confusion by matching what your words say with what your body language is saying. Make eye contact and respect personal space Never begin a conversation with your loved one if you are not making eye contact with them. If they cannot see you, they may be distracted and not hear what you say. Remember to never stand too close to them or look down at them while speaking, as this may come off as intimidating. Maintain eye contact throughout the entire conversation so you know they are paying attention and vice versa. Use touch to reassure Gentle physical touch can help reassure your loved one that you are there and listening to them. These gestures could include a pat on the back, handshake, or a hug. Observe their nonverbal reactions Dementia or Alzheimer s disease can make it difficult for your loved one to express themselves verbally. Watch out for nonverbal cues from your loved one such as frustration or anger and adjust your response and actions to the situation. Conclusion When you become the caregiver of someone with dementia or Alzheimer s disease, every day brings a new challenge. The disease may progress slower or quicker than what you read online, and you may not be prepared for the mental and physical exhaustion caregivers face. Learning as much as you can about memory loss diseases can help you cope and find ways to help your loved one who suffers from them. 12
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Sources: https://www.agingcare.com/articles/alzheimers-disease-tips-for-caregivers-108031.htm https://www.mayoclinic.org/healthy-lifestyle/caregivers/in-depth/alzheimers-caregiver/art-20047577?pg=1 http://dailycaring.com/6-nonverbal-dementia-communication-techniques-make-caregiving-easier/?platform=hootsuite 15