Caring for Loved Ones With Dementia - Home Helpers
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Caring for Loved Ones With Dementia - Home Helpers
- 1. Caring for Loved Ones With Dementia
- 2. Objectives: • What is Dementia? • Facts and Figures • Understanding your Loved One with Dementia • Caregiving Tips • Creating a Safe Environment • Additional Resources Caring for Loved Ones With Dementia
- 3. What is Dementia? Dementia is the gradual deterioration of mental functioning, such as concentration, memory, and judgment, which affects a person’s ability to perform normal daily activities. Caring for Loved Ones With Dementia
- 4. Dementia Statistics • 35.6 million living with some form of Dementia • 5.4 million live in the U.S. (www.alz.org) • In 2030, 65.7million will be affected (-World Alzheimer Report) • Dementia will double every 20 years (-World Alzheimer Report) • Caregivers have significant depression and psychological issues (-World Alzheimer Report) Caring for Loved Ones With Dementia
- 5. Understanding the Person with Dementia • Help the person feel valued Use their name Respect their cultural values Give consideration Respect privacy Caring for Loved Ones With Dementia - alzheimers.org.uk/factsheets
- 6. Understanding the Person with Dementia • Help the person feel good about themselves Encourage them to express their feelings Offer simple choices Allow independence Break up tasks Help them take pride in their appearance Caring for Loved Ones With Dementia - alzheimers.org.uk/factsheets
- 7. Each person is unique Dementia affects each person differently Caring for Loved Ones With Dementia - alzheimers.org.uk/factsheets Understanding Your Loved One with Dementia Remember…
- 8. The journey into dementia has its disappointments to be endured as well as its triumphs to be cherished. In all of the uncertainties and confusion there may also be signs of hope, for this is a journey with intersecting signposts; reminders of the past and pointers to the future. There are always fresh opportunities for a new walk on a new day. Rosalie Hudson (2006) Spirited Walking In M Marshall & K Allan Dementia: Walking not Wandering London: Hawker (p.113) Caring for Loved Ones With Dementia
- 9. Caregiving Tips: COMMUNICATION Caring for Loved Ones With Dementia – Set a positive mood – Get the person’s attention – Speak clearly – Use all your senses – Distract and redirect – Respond with reassurance – Talk about the “good old days” – Ask simple, answerable questions – Maintain sense of humor - Family Caregiver Alliance
- 10. Caregiving Tips: BEHAVIOR/AGITATION Caring for Loved Ones With Dementia – You cannot change the person – Inform the family – Behavior has a purpose – Behavior is triggered – It works today only – Reduce caffeine and junk food – Reduce noise/clutter – Maintain a routine – Use calming techniques - Family Caregiver Alliance
- 11. Caring For Loved Ones With Dementia Caregiving Tips: EATING/NUTRITION - Make meals a - Eat with the person daily routine - Prepare foods with the - Make mealtimes special person in mind - Encourage eating independently
- 12. Caregiving Tips: WANDERING Caring For Loved Ones with Dementia – Regular exercise – Faux barriers – Put away essential items – Provide a safe place - Family Caregiver Alliance - The Alzheimer’s Reading Room
- 13. Caregiving Tips: REPETITIVE SPEECH Caring For Loved Ones With Dementia – Provide reassurance – Distract – Avoid telling them, “You just said that” – Short notice works best – Communicate what to expect - Family Caregiver Alliance
- 14. Caregiving Tips: PARANOIA Caring For Loved Ones With Dementia – Don’t argue or disagree – Keep small amounts of money – Go along – Respond to the feeling - Family Caregiver Alliance
- 15. Caregiving Tips: SLEEPLESSNESS/SUNDOWNING Caring For Loved Ones With Dementia – Combination of factors include: Exhaustion and confusion with day/night – Increase activity – Discourage napping – Encourage good nutrition – Quiet and calm evenings – Lighting - Family Caregiver Alliance
- 16. Caregiving Tips: BATHING Caring For Loved Ones With Dementia What was the client’s hygiene routine? Reduce number of times per week Allow modesty Be mindful of the environment Never leave unattended Shampoo hair separately Consider bed baths - Family Caregiver Alliance
- 17. Caregiving Tips: DRESSING Caring For Loved Ones With Dementia Encourage independence Help them stay comfortable Give choices Change clothes regularly Accept the unusual Allow enough time - Family Caregiver Alliance
- 18. Creating a Safe Environment Caring For Loved Ones With Dementia Lighting Falls Dangerous substances The kitchen Risk of fire - Family Caregiver Alliance
- 19. 9. Creating a Safe Environment 8. Be Patient and Encourage Independent Dressing 7. Allow Modesty in Bathing 6. Encourage Good Nutrition/Discourage Napping 5. Don’t Argue or Disagree 4. Communicate what is expected 3. Regular Exercise/Faux Barriers 2. Remember: You Cannot Change the Person 1. Ask Simple; Answerable Questions Caring For Loved Ones With Dementia
- 20. Additional Resources www.alz.org - newsletters - latest research - find your local chapter Home Helpers www. ( )
- 21. Questions?
Notas del editor
- Dementia is caused by the damage of brain cells. A head injury, stroke, brain tumor or disease (such as Alzheimer's disease) can damage brain cells and lead to dementia.Dementia isn't a specific disease. Instead, dementia describes a group of symptoms affecting intellectual and social abilities severely enough to interfere with daily functioning. Many causes of dementia symptoms exist. Memory loss generally occurs in dementia, but memory loss alone doesn't mean you have dementia. Dementia indicates problems with at least two brain functions, such as memory loss and impaired judgment or language.
- Studies show there is now an estimated 35.6 million people living with some form of dementia worldwide. (Up from 24 million in 2009.) Approximately 5.4 million people in the U.S. have dementia, many of which are aged 65 and older (1 in 8 adults), according to a study by the Alzheimer’s Association .According to the World Alzheimer Report, released by Alzheimer's Disease International (ADI), an estimated 35.6 million people worldwide will be living with dementia in 2010. This is a 10% increase over previous global dementia occurrence reported in 2005. According to the new report, dementia occurrence will nearly double every 20 years, to 65.7 million in 2030 and 115.4 million in 2050. The report also focuses on the impact of dementia. For example, statistics cited in the new report suggest that 40% to 75% of caregivers have significant psychological illness as a result of their caregiving, and 15% to 32% have depression.
- Your loved one with dementia needs to feel respected and valued for who they are now, as well as for who they were in the past. There are many things that the people around them can do to help, including: trying to be flexible and tolerant, making time to listen, have regular chats, and finding things to do together.Use their name. Our sense of who we are is closely connected to the names we call ourselves. It's important that people address the person with dementia in a way that the person recognizes and prefers. Some people may be happy for anybody to call them by their first name or nickname. Others may prefer younger people, or those who do not know them very well, to address them formally and to use courtesy titles, such as Mr. or Mrs.Respecting cultural valuesMake sure you explain the person's cultural or religious background, and any rules and customs, to anyone from a different background so that they can behave accordingly. These may include: respectful forms of address, what they can eat, religious observances, such as prayer and festivals, particular clothing or jewelry that the person (or those in their presence) should or should not wear, any forms of touch or gestures that are considered disrespectful, ways of undressing, ways of dressing the hair, etc.Give ConsiderationMany people with dementia have a fragile sense of self-worth; it's especially important that people continue to treat them with consideration, however advanced their dementia. Be kind and reassuring to the person you're caring for without talking down to them. Never talk over their head as if they are not there - especially if you're talking about them. Include them in conversations. Avoid scolding or criticizing them - this will make them feel small. Look for the meaning behind their words, even if they don't seem to be making much sense. Whatever the detail of what they are saying, the person is usually trying to communicate how they feel. Try to imagine how you would like to be spoken to if you were in their position.Respect privacy Try to make sure that the person's right to privacy is respected. Suggest to other people that they should always knock on the person's bedroom door before entering. If your loved one needs help with intimate personal activities, such as washing or using the toilet, do this sensitively and make sure the door is kept closed if other people are around.
- When you spend time with someone with dementia, it is important to take account of their abilities, interests and preferences. These may change as the dementia progresses. It's not always easy, but try to respond flexibly and sensitively. Encourage them to express their feelings: Dementia affects people's thinking, reasoning and memory, but the person's feelings remain intact. Your loved one with dementia will probably be sad or upset at times. In the earlier stages, they may want to talk about their anxieties and the problems they are experiencing. Try to understand how the person feels. Make time to offer them support, rather than ignoring them or making light of it. Don't brush their worries aside, however painful they may be, or however insignificant they may seem. Listen, and show the person that you are there for them.Offering simple choices: Make sure that, whenever possible, you inform and consult your loved one about matters that concern them. Give them every opportunity to make their own choices. Always explain what you are doing and why. You may be able to judge the person's reaction from their expression and body language. People with dementia can find choices confusing, so keep it simple. Phrase questions so that they only need a 'yes' or 'no' answer, such as 'Would you like to wear your yellow sweater today?' rather than 'Which sweater would you like to wear today?'Allow independence: Avoid situations in which the person is bound to fail, as this can be humiliating. Look for tasks that they can still manage and activities they enjoy. Give plenty of encouragement. Let them do things at their own pace and in their own way. Do things WITH your loved one, rather than for them, to help them retain their independence.Break up tasks: Break activities down into small steps so that they feel a sense of achievement, even if they can only manage part of a task.Help them take pride in their appearance: Our self-respect is often bound up with the way we look. Encourage the person to take pride in their appearance, and compliment them on how they look.
- Each person with dementia is a unique individual with their own individual experiences of life, their own needs and feelings, and their own likes and dislikes. Although some symptoms of dementia are common to everyone, dementia affects each person in different ways.
- Improving communication skills will help make caregiving less stressful and will likely improve the quality of the relationship. Good communication skills will also enhance the ability to handle difficult behavior encountered.Set a positive mood for interaction. Attitude and body language communicate feelings and thoughts stronger than words. Set a positive mood by speaking to your loved one in a pleasant and respectful manner. Use facial expressions, tone of voice and physical touch to help convey the message.Get the person's attention. Limit distractions and noise - turn off the radio or TV, close the curtains or shut the door, or move to quieter surroundings. Before speaking, make sure you have their attention; address them by name, identify yourself by name and relation, and use nonverbal cues and touch to help keep them focused. If the person is seated, get down to their level and maintain eye contact.State your message clearly. Use simple words and sentences. Speak slowly, distinctly and in a reassuring tone. Refrain from raising your voice higher or louder; instead, pitch your voice lower. If they don’t understand the first time, use the same wording to repeat your message or question. If they still don’t understand, wait a few minutes and rephrase the question. Use the names of people and places instead of pronouns or abbreviations.Listen with your ears, eyes and heart. Be patient in waiting for a reply. If they are struggling for an answer, it's okay to suggest words. Watch for nonverbal cues and body language, and respond appropriately. Always strive to listen for the meaning and feelings that motivate the words.When the going gets tough, distract and redirect. When your loved one becomes upset, try changing the subject or the environment. For example, ask them for help or suggest going for a walk. It is important to connect with the person on a feeling level, before you redirect. You might say, "I see you're feeling sad - I'm sorry you're upset. Let's go get something to eat."Respond with reassurance. People with dementia often feel confused, anxious and unsure of themselves. Further, they often get reality confused and may recall things that never really occurred. Avoid trying to convince them they are wrong. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support and reassurance. Talk about the good old days. Remembering the past is often a soothing and affirming activity. Many people with dementia may not remember what happened 45 minutes ago, but they can clearly recall their lives 45 years earlier. Therefore, avoid asking questions that rely on short-term memory, such as asking the person what they had for lunch. Instead, try asking general questions about the person's distant past - this information is more likely to be retained.Ask simple, answerable questions. Ask one question at a time; those with yes or no answers work best. Refrain from asking open-ended questions or giving too many choices. Maintain your sense of humor.Use humor whenever possible, though not at the person's expense. People with dementia tend to retain their social skills and are usually delighted to laugh along with you.
- Some of the greatest challenges of caring for someone with dementia is the personality and behavior changes that often occur. You can best meet these challenges by using creativity, flexibility, patience and compassion. It also helps to not take things personally and maintain your sense of humor. To start, consider these ground rules: We cannot change the person. The loved one you are caring for has a brain disorder that shapes who they have become. When you try to control or change their behavior, you'll most likely be unsuccessful or be met with resistance. It's important to: try to accommodate the behavior, not control the behavior. For example, if the person insists on sleeping on the floor, place a mattress on the floor to make him more comfortable.Inform the family. Behavioral problems may have an underlying medical reason: perhaps the person is in pain or experiencing an adverse side effect from medications. In some cases, like incontinence or hallucinations, there may be some medication or treatment that can assist in managing the problem.Behavior has a purpose. People with dementia typically cannot tell us what they want or need. They might do something, like take all the clothes out of the closet on a daily basis, and we wonder why. It is very likely that the person is fulfilling a need to be busy and productive. Always consider what need the person might be trying to meet with their behavior - and, when possible, try to accommodate them.Behavior is triggered. It is important to understand that all behavior is triggered - it doesn't occur out of the blue. It might be something a person did or said that triggered a behavior or it could be a change in the physical environment. The root to changing behavior is disrupting the patterns that we create. Try a different approach, or try a different consequence.What works today, may not tomorrow. The multiple factors that influence troubling behaviors and the natural progression of the disease process means that solutions that are effective today may need to be modified tomorrow - or may no longer work at all. The key to managing difficult behaviors is being creative and flexible in your strategies to address a given issue.Agitation refers to a range of behaviors associated with dementia, including irritability, sleeplessness, and verbal or physical aggression. Often these types of behavior problems progress with the stages of dementia, from mild to more severe. Agitation may be triggered by a variety of things, including environmental factors, fear and fatigue. Most often, agitation is triggered when the person experiences 'control' being taken from him. Try these actions: Reduce caffeine intake, sugar and junk food. Reduce noise, clutter or the number of persons in the room.Maintain structure by keeping the same routines. Keep household objects and furniture in the same places. Familiar objects and photographs offer a sense of security and can suggest pleasant memoriesUse calming techniques such as soothing music, a picture album, reading or walks to reduce agitation. Speak in a reassuring voice. Allow the person to do as much for himself as possible - support his independence and ability to care for himself.Acknowledge the confused person's anger over the loss of control in his life. Tell them you understand their frustration. Distract the person with a snack or an activity. Allow them to forget the troubling incident. Confronting a confused person may increase anxiety.
- Ensuring that your loved one is eating enough nutritious foods and drinking enough fluids is a challenge. People with dementia literally begin to forget that they need to eat and drink. Complicating the issue may be dental problems or medications that decrease appetite or make food taste “funny.” The consequences of poor nutrition are many, including weight loss, irritability, sleeplessness, bladder or bowel problems and disorientation.Make meal and snack times part of the daily routine and schedule them around the same time every day. Instead of three big meals, try five or six smaller ones.Make mealtimes a special time. Try flowers or soft music. Turn off loud radio programs and the TV.Eating independently should take precedence over eating neatly or with “proper” table manners. Finger foods support independence. Pre-cut and season the food. Try using a straw or a child’s “sippy cup” if holding a glass has become difficult. Provide assistance only when necessary and allow plenty of time for meals.Sit down and eat with the person. Often they will mimic your actions and it makes the meal more pleasant to share it with someone.Prepare foods with the person in mind. If they have dentures or trouble chewing or swallowing, use soft foods or cut food into bite-size pieces.If chewing and swallowing are an issue, try gently moving the person’s chin in a chewing motion or lightly stroking their throat to encourage them to swallow.If loss of weight is a problem, offer nutritious high-calorie snacks between meals. Breakfast foods high in carbohydrates are often preferred. On the other hand, if the problem is weight gain, keep high-calorie foods out of sight. Instead, keep handy fresh fruits, veggie trays and other healthy low-calorie snacks.A Home Helpers caregiver can assist with preparing nutritious meals as well as provide a companion during mealtimes to encourage eating.
- People with dementia walk, seemingly aimlessly, for a variety of reasons, such as boredom, medication side effects or to look for 'something' or someone. They also may be trying to fulfill a physical need - thirst, hunger, a need to use the toilet or exercise. Discovering the triggers for wandering are not always easy, but they can provide insights to dealing with the behavior.Make time for regular exercise to minimize restlessness.You might try faux barriers like a curtain or colored streamer to mask the door. A "stop" sign or "do not enter" sign also may help or by placing a black mat on the front porch may appear to be an impassable hole to the person with dementia.Put away essential items such as their coat, purse or glasses. Some individuals will not go out without certain articles. Sometimes very simple things can help like providing a safe place to wander, such as in a fenced yard. By providing a safe place, you may avoid confrontation.
- People with dementia will often repeat a word, statement, question or activity over and over. While this type of behavior is usually harmless for the person with dementia, it can be annoying and stressful to caregivers. Sometimes the behavior is triggered by anxiety, boredom, fear or environmental factors. Provide plenty of reassurance and comfort, both in words and in touch. Try distracting with a snack or activity.Avoid reminding them that they just asked the same question. Try ignoring the behavior or question and distract the person into an activity.Don't discuss plans with a confused person until immediately prior to an event.If they keep asking the same question, make a sign. Example: When is dinner? Place a sign on the kitchen table, "Dinner is at 6:30" to remove anxiety and uncertainty about anticipated events.
- With paranoia, what your loved one is experiencing is very real to them. It is best not to argue or disagree. This, too, is part of the dementia - try not to take it personally.If the confused person suspects money is 'missing,' allow her to keep small amounts of money in a pocket or handbag for easy inspection.Help them look for the object and then distract them into another activity. Try to learn where the confused person's favorite hiding places are for storing objects, which are frequently assumed to be 'lost.'Respond to the feeling behind the accusation and then reassure the person. You might try saying, "I see this frightens you; stay with me, I won't let anything happen to you."
- Restlessness, agitation, disorientation and other troubling behavior in people with dementia often get worse at the end of the day and sometimes continue throughout the night. Experts believe this behavior, commonly called sundowning, is caused by a combination of factors, such as exhaustion from the day's events and changes in the person's biological clock that confuse day and night.Increase daytime activities, particularly physical exercise. Discourage inactivity and napping during the day. Watch out for dietary culprits, such as sugar, caffeine and some types of junk food. Eliminate or restrict these types of foods and beverages to early in the day. Plan smaller meals throughout the day, including a light meal, such as half a sandwich, before bedtime.Plan for the afternoon and evening hours to be quiet and calm; however, structured, quiet activity is important. Perhaps take a stroll outdoors, play a simple card game or listen to soothing music together.Turning on lights well before sunset and closing the curtains at dusk will minimize shadows and may help diminish confusion. At minimum, keep a nightlight in the person's room, hallway and bathroom.Our highly trained and compassionate caregivers can provide companionship and assist with activities to encourage activity. In addition, they are able to stay with your loved one at night to ensure their safety and to allow you to get adequate rest.
- People with dementia often have difficulty remembering 'good' hygiene, such as brushing teeth, toileting, bathing and regularly changing their clothes. From childhood we are taught these are highly private and personal activities; to be undressed and cleaned by another can feel frightening, humiliating and embarrassing. As a result, bathing often causes distress for both caregivers and their loved one. What is your loved one’s hygiene routine - did they prefer baths or showers? Mornings or nights? Did she have her hair washed at the salon or do it herself? Was there a favorite scent, lotion or talcum powder she always used? Adopting - as much as possible – their past bathing routine may provide some comfort. Remember that it may not be necessary to bathe every day.If the person has always been modest, enhance that feeling by making sure doors and curtains are closed. Whether in the shower or the bath, keep a towel over their front, lifting to wash as needed. Have towels and a robe or their clothes ready when they get out.Be mindful of the environment, such as the temperature of the room and water (older adults are more sensitive to heat and cold) and the adequacy of lighting. Remember - people are often afraid of falling. Help them feel secure in the shower or tub.Never leave a loved one with dementia unattended in the bath or shower. Have all the bath things you need laid out beforehand.If giving a bath, draw the bath water first. Reassure the person that the water is warm - perhaps pour a cup of water over their hands before they step in.If hair washing is a struggle, make it a separate activity. Or, use a dry shampoo.If bathing in the tub or shower is consistently traumatic, a bed bath provides a soothing alternative.
- Helping a person to look the way they want to look is an important way of maintaining their confidence. Regularly compliment the person on the way they look, and encourage them to take pride in their appearance.Encourage independenceLay out clothes in the order the person will put them on. Remind them sensitively which garment comes next, or hand them the next item that they need. If the person is confused, give instructions in very short steps, such as, 'Now put your arm through the sleeve.'If mistakes are made − for example, by putting something on the wrong way − be tactful, or find a way for you both to laugh about it.Label drawers where particular items of clothing are kept, or store whole outfits together.Help the person stay comfortableMake sure the room is warm enough to get dressed in. Ask if the person would like to go to the toilet before getting dressed.Try to keep to the person's preferred routine − for example, they may like to put on all their underwear before putting on anything else.It can be useful if the person wears several layers of thin clothing rather than one thick layer, as they can then simply remove a layer if it gets too warm. Remember that the person may no longer be able to tell you if they are too hot or cold, so keep an eye out for signs of discomfort.Give the person choiceWherever possible, ask the person what they would like to put on. Someone with dementia needs the dignity of having choice in what they wear, but too many options can be confusing, so it may be best to make suggestions one at a time. If the person has lots of clothes, put the things they wear most frequently somewhere accessible. This will make it easier for the person to choose.Change clothes regularlySometimes people with dementia are reluctant to undress even when they go to bed, or will refuse to change their clothes. It's important to make sure the person changes their clothes frequently, and to find ways to do this without upsetting them. Here are a few strategies you could use to persuade them: Remove the dirty clothing and put clean clothing in its place when the person is in the bath or shower. Persuade them to change because someone is visiting. Say how much you'd love to see them wearing something new.Accept any unusual clothing choicesIt is important to respect the person's choice of what to wear. As long as it does no harm, it's probably better to accept the person dressing in an unusual way, or wearing clothing that is out of place, than to have a confrontation. If the person is determined to wear a hat in bed, for example, or a heavy coat in summer, try to respect their choice. Allow enough timeIf you are helping a loved one with dementia to dress, allow plenty of time so that neither of you feels rushed. They may take longer to process information than they used to, and this will affect their ability to make choices, but if you can make dressing an enjoyable activity, the person will feel more relaxed and confident. Try to use the time to chat about what you are doing, and anything else that might be of interest.
- When considering the needs of someone with dementia, it is important to find the right balance between independence and the need for protection. There is no such thing as a completely risk-free environment, and when someone is living with dementia it may be that some minor accidents are inevitable. But there are some sensible precautions that those around them can take to help minimize risk.There are a number of ways to make a home safer. Some of these are simple, practical steps. LightingMake sure that the lighting in the home is bright enough so that everyone can see clearly what they are doing, but avoid lighting which shines directly into people's eyes. If the person with dementia is likely to get up at night, leave a light on in the hall and a safe night light in the bedroom. Make sure there is a light on in the bathroom so the person can find their way at night.FallsWatch out for potential hazards such as slippery rugs, loose carpets (especially on the stairs) and slick floors, unsteady furniture, obstructive clutter or objects lying on the floor.Dangerous substancesAlways store medicines somewhere safe. Lock away any poisonous substances, such as paint stripper, bleach or disinfectant, as a person with dementia may not recognize what they are. The kitchenIf the person no longer seems to recognize danger, remove any potentially dangerous implements, such as sharp knives, but place items in everyday use within easy reach. Risk of fireSmoking can be risky. A person with dementia who smokes runs the risk of starting a fire because they may forget that they have lit a cigarette and will leave it burning. Electric blankets can be dangerous for people with impaired memory, as overheating can cause a fire. An electric blanket with safety features, such as automatically switching off at a certain temperature would be a better choice.
- An excellent resource is the Alzheimer’s Association website – www.alz.org. Here you can learn all about the latest research surrounding Alzheimer’s, sign up for their free e-newsletter, and even find out how to connect with your local chapter. You can also contact your local Home Helpers office and myself for support in caring for your loved ones with dementia or other concerns. (PERSONALIZE THIS WITH LOCAL INFORMATION)Thank you so much for allowing me to join you today. (Take questions as time permits.)