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Alzheimer’s Disease: Helpful Tips for Daily Life

December 27, 2017

(UCSF Memory and Aging Center) The regular tasks of day-to-day life can become more challenging for a person as their disease gets more advanced.

Activities of daily living are divided into two major categories. The first, often called instrumental activities, includes more complex types of activities such as paying bills, shopping, managing medications, working and driving. The second category is activities related to personal care and includes eating, bathing, dressing, getting in or out of bed or a chair and using the toilet. In the beginning of the disease, the patient will have trouble completing the instrumental, complex activities. As the disease progresses, the person will have difficulty managing the more basic functions and will need help from caregivers.

General Tips

Remember to:

  • Facilitate their performance
  • Keep the patient as active as possible
  • Focus on their abilities
  • Avoid distress between you and the patient
  • If a lack of motivation is the barrier to performing a task, consider offering a reward for desired behaviors
  • Give yourself a break from time to time

Bathing

If the patient becomes difficult to bathe, try this:

  • A sponge bath in the tub or on a chair instead of a shower
  • Talk to your loved one in a soothing voice while bathing and talk through each step you take
  • Let your loved one do as much as possible
  • Plan the bath or shower for the time of day when the person with FTD is at their best
  • Bathe every couple of days instead of every day
  • Don’t force anything

Dressing

Dressing is something your loved one may be able to do for a relatively long time. It might take them longer than it used to; but if they are safe, let them do it themselves, even if it takes all morning. Try this:

  • Find clothes with larger buttons or replacing closures with Velcro
  • Look for pants or skirts with elastic pull-on waists
  • Try shoes that fit well, stay on, and don’t require laces (to prevent tripping)
  • Consider placing a baby monitor in their room. It will allow them to be more independent while you are nearby and alert to problems.
  • If getting undergarments off is a problem, use wrap around skirts as clothes

Driving

Driving tends to be one of the most contentious issues in relationships with people with neurodegenerative disease. Try this:

  • Get a steering wheel lock or another safety device that prevents someone with the ignition keys to take the car
  • If the person with dementia is upset about losing their license, take them to the DMV to get pick up the forms to get reinstated. Drive home and tell them that when the forms are completed, you can go back and file them. Rarely do the forms get completed, but your loved one usually feels better for having gone through the exercise of getting the forms.
  • For people with language difficulties, it might be helpful for the person to carry a letter from the doctor explaining their language difficulties.

Finances

Sometimes the person only needs some support to continue managing the finances. If you can offer some support without taking over the activity, this is usually very rewarding for both patients and families. If they lack interest and you feel overwhelmed to look after them, consider asking for help. The disease can cause poor judgment which can lead to overspending (which we mention also under shopping) and other difficulties. Try this:

  • Involve your bank manager, a family member or a friend that you can trust
  • Limit access to one card/bank account only
  • Frequently change passwords on computers to prevent over-use or over-spending online
  • Consider disabling computers or removing hard drives to prevent family members from using the computer

Grooming

If personal hygiene and grooming get neglected, look for ways to simplify the process. Try this:

  • Try a simple haircut that is easy to manage
  • Switch to an electric razor which has less risk of cuts and is easier to hold
  • When helping with grooming tasks, move slowly and explain what you are doing in a calm voice so that you don’t startle them
  • When washing the face, consider cold creams or disposable face wipes that have cleanser already in them – it will reduce the number of steps needed to finish the task
  • Try oral swabs if brushing becomes too difficult
  • If the patient is physically capable of performing these tasks but uninterested, you can try rewarding the person for completing a grooming task with a favored item or treat.

Household Chores

Decline in doing house chores can be caused by lack of motivation or by planning difficulties. Planning difficulties usually happen because the patient cannot cope with the several steps that are involved in a complex task. Try this:

  • Break down larger tasks into small steps like
    • setting the table
    • stirring
    • preparing one dish at a time
    • fetching, peeling, boiling, draining, allowing to cool, seasoning, etc.
  • Find simpler tasks that the person can complete safely (such as folding laundry)
  • Reward the person with pleasurable activities or healthy treats after finishing a chore

Shopping

Patients with the behavioral forms of dementia may have difficulties in controlling their shopping habits, for instance, they may want to buy things they do not need, spend more money than necessary or shoplift. Strategies to control impulsive shopping are closely related to the strategies for controlling finances better. Try this:

  • Limit the amount of money easily accessible
  • Take some business cards explaining your family member’s problems along with you when out in public to discreetly hand out to staff in stores, restaurants and banks. These cards can be made on a home computer and can say something like: ‟This person has an Alzheimer’s-like disorder; thank you for your patience” (click here to download cards you can print).
  • If shoplifting is a problem, it may be helpful to let the store management know in advance so that incidents can be handled discretely
  • Avoid letting the person shop alone

If the patient has difficulties in understanding the names of the products, fruits or vegetables, they might avoid shopping altogether even if they used to do it. Try making a list of pictures or packages to simplify comprehension and motivate them to do a familiar activity.

Sleeping

Managing your loved one’s sleep problems will ensure that both of you will get more rest. Try this:

  • Provide at least a little exercise every day – even if it is just a walk around the yard
  • Engage them in a quiet and calming activity before bedtime
  • Keep a consistent schedule of wake and sleep times
  • Give your loved one tasks to complete – folding the laundry, folding napkins, sorting things – to keep them active during the day
  • Keep your loved one hydrated during the day but avoid giving them a lot of fluids before bed time to decrease the likelihood of accidents and/or the need to get up during the night
  • Avoid a lot of TV watching during the day – it usually leads to napping
  • Consider hiring someone to sleep over a couple of nights a week to relieve you of night time duty

Supervision & Safety

It can be difficult to decide when a patient’s activities might be hazardous to themselves or others. Some patients may become less vigilant to risks (crossing a busy street, for example) or show poor judgment (leave the house without telling you). Many patients have trouble acknowledging the risks and hazards and may resist suggestions for increased safety and security. The following are strategies that may be employed. University Health Network (UHN) in Toronto, Canada put together this list of home safety tips and recommendations for people who have problems with their vision due to dementia.

  • Find a companion for the patient
    • Hire a college student to accompany the patient on walks, trips to the movies, or lunch.
    • Network with religious and social organizations to find the right person.
    • Hire an aide through a private agency or your local county health services.
    • Set up a schedule with other family members, so there is not one single family member shouldering the entire burden.
  • Take the patient to work with you if not too disruptive. Some patients may be able to participate in tasks or be content to “hang out”.
  • Hire a social worker or case manager for help in locating resources
  • Try a day program with an environment and activities that are appealing to the patient. Work with the day program staff to help them understand the needs of your loved one.
  • Have an up-to-date picture of the patient that can be given to local law enforcement in the event the patient gets lost.
  • The patient can be registered with the Alzheimer’s Association Safe Return® program. This is a nationwide identification program that provides assistance when a person with dementia becomes lost.
  • Consult a legal expert for advice in setting up trusts, protecting assets, and obtaining financial assistance (state or federal) for caregiving costs.
  • Secured (locked) units are an option in the event there are safety concerns for the patient or others.

Talking

As the disease progresses, the patient may lose the ability to understand you or to be understood. Simplify what you say and closely observe their behavior for clues. Try this:

  • Use simple words and short sentences with a calm and soothing tone of voice
  • Maintain a respectful approach and avoid speaking to the person like they are a child
  • Minimize distractions like the television and radio when talking so that your loved one can focus on the conversation
  • Include your loved one in the conversation even if they don’t or can’t respond. They may very well be able to hear and understand but not be able to respond.
  • Try engaging them by completing the following sentences:
    • I remember when…
    • Thank you for…
    • I’m proud of…
  • Don’t rush your loved one – give them time to express themselves
  • Try to read the body language for clues
  • Reading and writing may also be affected, so offer to help proofread or copy letters for them so they stay in touch with friends and family
  • Aphasia identification cards explaining that the person has a language problem can aid in communicating the person’s condition to others

Using the Telephone

Using the telephone can be difficult for people with diseases affecting language as they may feel pressured, but those with behavioral variants may abuse the telephone in other ways - online purchases, inappropriate calls, messages not received, etc. People with memory impairment might forget to write down messages or important information. Try this:

  • Help them prepare a script to be used when they make a telephone call to reduce the stress of coming up with the words
  • Contact your telephone service provider to block incoming calls from telemarketers and sales people
  • Lock the keypad on your cell phone to prevent outgoing calls
  • Have people contact you on your cell phone where they can leave a message you will receive

Visitors

Having friends and family visit can help relieve social isolation and depression, but be aware that visits can cause fatigue or agitation in your loved one from too much stimulation. You can prepare visitors ahead of time by printing or emailing sections of this website which explain the disease. Try this:

  • Pay attention to how your loved one responds to visitors.
    • Are they welcomed?
    • Are visits tiresome?
    • Do they make your loved one more restless or agitated?
  • Explain to visitors:
    • How to approach
    • How to talk to the patient
    • What to expect from the patient: patients may seem apathetic or disengaged from the visitors. Encourage visitors not to take this personally. The visit can be helpful to the patient and the caregiver, even if the patient seems disinterested. Conversely, inappropriate behavior toward visitors can emerge; if this is likely, warn the visitors in advance and give them an ‟exit strategy” if it becomes too uncomfortable for them.
  • Keep visits short without any expectation of ‟entertaining” the guest
  • Try having visiting hours scheduled into your daily routine and use that time to play games, go for a walk or do something else that your loved one finds enjoyable
  • If you have a meal with friends, prepare them for any changes in eating behavior in advance, so that you do not feel embarrassed. You will be surprised how understanding some friends can be.
  • If the patient gets upset when people leave, try leaving as a meal is served to the patient. The meal often provides enough distraction so that the patient does not get distressed by the caregiver or visitors leaving.
Citation

https://memory.ucsf.edu/tips-daily-life#talking

© 2017 The Regents of the University of California

 

Coping with Late-Stage Alzheimer’s Disease

December 27, 2017

(NIA) When a person moves to the later stages of AD, caregiving may become even harder. This section offers ways to cope with changes that take place during severe or late-stage AD.

If caring for the person has become too much for you, click When You Need Help for possible sources of help.

When the Person with AD Can’t Move

If the person with AD can’t move around on his or her own, contact a home health aide, physical therapist, or nurse. Ask the doctor for a referral to one of these health professionals. They can show you how to move the person safely, such as changing his or her position in bed or in a chair.

Also, a physical therapist can show you how to move the person’s body joints using range-of-motion exercises. During these exercises, you hold the person’s arms or legs, one at a time, and move and bend it several times a day. Movement prevents stiffness of the arms, hands, and legs. It also prevents pressure or bedsores.

How to Make Someone with AD More Comfortable

Here are some ways to make the person with AD more comfortable:

  • Buy special mattresses and wedge-shaped seat cushions that reduce pressure sores. You can purchase these at a medical supply store or drugstore or online. Ask the home health aide, nurse, or physical therapist how to use the equipment.
  • Move the person to a different position at least every 2 hours.
  • Use a lap board to rest the person’s arms and support the upper body when he or she is sitting up.
  • Give the person something to hold, such as a wash cloth, while being moved. The person will be less likely to grab onto you or the furniture. If he or she is weak on one side, stand on the weak side to support the stronger side and help the person change positions.

How to Keep from Hurting Yourself When Moving a Person with AD

To keep from hurting yourself when moving someone with AD:

  • Know your strength when lifting or moving the person; don’t try to do too much. Also, be aware of how you position your body.
  • Bend at the knees and then straighten up by using your thigh muscles, not your back.
  • Keep your back straight, and don’t bend at the waist.
  • Hold the person as close as possible to avoid reaching away from your body.
  • Place one foot in front of the other, or space your feet comfortably apart for a wide base of support.
  • Use little steps to move the person from one seat to another. Don’t twist your body.
  • Use a transfer or “Posey” belt, shown above. You can buy this belt at a medical supply store or drugstore. To move the person, slide him or her to the edge of the chair or bed by wrapping the transfer belt around the person’s waist. Face the person and place your hands under the belt on either side of his or her waist. Then bend your knees, and pull up by using your thigh muscles to raise the person from a seated to a standing position.

How to Make Sure the Person Eats Well

In the later stages of AD, many people lose interest in food. You may begin to notice some changes in how or when the person eats.

He or she may not:

  • Be aware of mealtimes
  • Know when he or she has had enough food
  • Remember to cook
  • Eat enough different kinds of foods

This means the person may not be getting the foods or vitamins and minerals needed to stay healthy. Here are some suggestions to help the person with late-stage AD eat better. Remember that these are just tips. Try different things and see what works best for the person.

You might try to:

  • Serve meals at the same time each day.
  • Make the eating area quiet. Turn off the TV, CD player, or radio.
  • Offer just one food at a time instead of filling the plate or table with too many things.
  • Use colorful plates so the person can see the food.
  • Control between-meal snacks. Lock the refrigerator door and food cabinets if necessary. Put masking tape near the top and/or bottom of the doors.
  • Make sure the person’s dentures are tight fitting. Loose dentures or dentures with bumps or cracks may cause choking or pain, making it hard to eat. Take poorly fitting dentures out until the person can get dentures that fit.
  • Let the doctor know if your family member loses a lot of weight, for example, if he or she loses 10 pounds in a month.

Here are specific suggestions about foods to eat and liquids to drink:

  • Give the person finger foods to eat such as cheese, small sandwiches, small pieces of chicken, fresh fruits, or vegetables. Sandwiches made with pita bread are easier to handle.
  • Give him or her high-calorie, healthy foods to eat or drink, such as protein milk shakes. You can buy high-protein drinks and powders at grocery stores, drugstores, or discount stores. Also, you can mix healthy foods in a blender and let the person drink his or her meal. Use diet supplements if he or she is not getting enough calories. Talk with the doctor or nurse about what kinds of supplements are best.
  • Try to use healthy fats in cooking, such as olive oil. Also, use extra cooking oil, butter, and mayonnaise to cook and prepare food if the person needs more calories. If the person has heart disease, check with the doctor about how much and what kinds of fat to use.
  • If the person has diabetes or high blood pressure, check with the doctor or a nutrition specialist about which foods to limit.
  • Have the person take a multivitamin—a tablet, capsule, powder, liquid, or injection that adds vitamins, minerals, and other important things to a person’s diet.
  • Serve bigger portions at breakfast because it’s the first meal of the day.

What to Do About Swallowing Problems

As AD progresses to later stages, the person may no longer be able to chew and swallow easily. This is a serious problem. If the person chokes on each bite of food, there is a chance that the food could go into the lungs. This can cause pneumonia, which can lead to death.

The following suggestions may help with swallowing:

  • Make sure you cut the food into small pieces and make it soft enough to eat.
  • Grind food or make it liquid using a blender or baby food grinder.
  • Offer soft foods, such as ice cream, milk shakes, yogurt, soups, applesauce, gelatin, or custard.
  • Don’t use a straw; it may cause more swallowing problems. Instead, have the person drink small sips from a cup.
  • Limit the amount of milk the person drinks if it tends to catch in the throat.
  • Give the person more cold drinks than hot drinks. Cold drinks are easier to swallow.
  • Don’t give the person thin liquids, such as coffee, tea, water, or broth, because they are hardest to swallow. You can buy Thick-It® at most pharmacies. You add Thick-It® to liquids to make them thicker. You also can use ice cream and sherbet to thicken liquids.

Here are some other ideas to help people swallow:

  • Don’t hurry the person. He or she needs time to chew and swallow each mouthful before taking another bite.
  • Don’t feed a person who is drowsy or lying down. He or she should be in an upright, sitting position during the meal and for at least 20 minutes after the meal.
  • Have the person keep his or her neck forward and chin down when swallowing.
  • Stroke (gently) the person’s neck in a downward motion and say, “swallow” to remind him or her to swallow.
  • Find out if the person’s pills can be crushed or taken in liquid form.

Helping the person with AD eat can be exhausting. Planning meals ahead and having the food ready can make this task a little easier for you. Also, remember that people with AD may not eat much at certain times and then feel more like eating at other times. It helps to make mealtime as pleasant and enjoyable as possible. But, no matter how well you plan, the person may not be hungry when you’re ready to serve food.

Dental, Skin, and Foot Problems

Dental, skin, and foot problems may take place in early and moderate stages of AD, but most often happen during late-stage AD. Please see Dental problems for more information.

Body Jerking

Myoclonus is a condition that sometimes happens with AD. The person’s arms, legs, or whole body may jerk. This can look like a seizure, but the person doesn’t pass out. Tell the doctor right away if you see these signs. The doctor may prescribe one or more medicines to help reduce symptoms.

Skin Problems

Once the person stops walking or stays in one position too long, he or she may get skin or pressure sores.

To prevent skin or pressure sores, you can:

  • Move the person at least every 2 hours if he or she is sitting up.
  • Move the person at least every hour if he or she is lying down.
  • Put a 4-inch foam pad on top of the mattress.
  • Check to make sure that the foam pad is comfortable for the person. Some people find these pads too hot for sleeping or may be allergic to them. If the foam pad is a problem, you can get pads filled with gel, air, or water.
  • Check to make sure the person sinks a little when lying down on the pad. Also, the pad should fit snugly around his or her body.

To check for pressure sores:

  • Look at the person’s heels, hips, buttocks, shoulders, back, and elbows for redness or sores.
  • Ask the doctor what to do if you find pressure sores.
  • Try to keep the person off the affected area.

Foot Care

It’s important for the person with AD to take care of his or her feet. If the person can’t, you will need to do it.

Here’s what to do:

  • Soak the person’s feet in warm water; wash the feet with a mild soap; and check for cuts, corns, and calluses.
  • Put lotion on the feet so that the skin doesn’t become dry and cracked.
  • Cut or file their toenails.
  • Talk to a foot care doctor, called a podiatrist, if the person has diabetes or sores on the feet.

Related Publications from the NIA

Citation

https://www.nia.nih.gov/alzheimers/publication/coping-last-stages-ad/coping-late-stage-ad

National Institute on Aging

 

Adapting Activities for People with Alzheimer’s Disease

December 8, 2017

(NIH) Doing things we enjoy gives us pleasure and adds meaning to our lives. People with Alzheimer’s disease need to be active and do things they enjoy. However, don’t expect too much. It’s not easy for them to plan their days and do different tasks.

People with Alzheimer’s may have trouble deciding what to do each day, which could make them fearful and worried or quiet and withdrawn, or they may have trouble starting tasks. Remember, the person is not being lazy. He or she might need help organizing the day or doing an activity.

Activity Planning

Plan activities that the person with Alzheimer’s enjoys in your daily routine, and try to do them at a similar time each day. He or she can be a part of the activity or just watch. Here are things you can do to help the person enjoy the activity:

  • Match the activity with what the person with Alzheimer’s can do.
  • Choose activities that can be fun for everyone.
  • Help the person get started.
  • Decide if he or she can do the activity alone or needs help.
  • Watch to see if the person gets frustrated.
  • Make sure he or she feels successful and has fun.
  • Let him or her watch if that is more enjoyable.

Try These Activities

The person with Alzheimer’s disease can do different activities each day. This keeps the day interesting and fun. Here are some daily activities people with Alzheimer’s may enjoy:

  • Household chores: Wash dishes, set the table, prepare food, sweep the floor, dust, sort mail and clip coupons, sort socks and fold laundry, sort recycling materials or other things.
  • Cooking and baking: Decide what is needed to prepare the dish; measure, mix, and pour; tell someone else how to prepare a recipe; watch others prepare food.
  • Exercise: Take a walk together, watch exercise videos or TV programs made for older people, use a stationary bike, use stretching bands, throw a soft ball or balloon back and forth, lift weights or household items such as soup cans.
  • Music and dancing: Play music, talk about the music and the singer, ask what the person with Alzheimer’s was doing when the song was popular, sing or dance to well-known songs, attend a concert or musical program.
  • Pets: Feed, groom, walk, sit and hold a pet.
  • Gardening: Take care of indoor or outdoor plants, plant flowers and vegetables, water the plants when needed, go to school events, talk about how much the plants are growing.
  • Visiting with children: Play a simple board game, read stories or books, visit family members who have small children, walk in the park or around schoolyards, go to school events, talk about fond memories from childhood.

Going Out

People in the early stages of Alzheimer’s disease may still enjoy going out to places they enjoyed in the past. For example, the person might enjoy going to a favorite restaurant, park, shopping mall, swimming pool, museum, or theater. Keep going on these outings as long as you are comfortable with them.

Plan Ahead for Outings

Here are some tips to make outings fun:

  • Plan outings for the time of day when the person with Alzheimer’s is at his or her best.
  • Keep outings from becoming too long. Take note of how tired the person gets after a certain amount of time. Bring the person home before he or she becomes overtired.
  • Use a business-size card to tell others about the person’s disease. Sharing this information with store clerks or restaurant staff can make outings more comfortable for everyone. For example, the card could say “My family member has Alzheimer’s disease. He might say or do things that are unexpected. Thank you for your understanding.”

Eating Out

Going out to eat can be a welcome change, but it can also be challenging. Planning can help. Before choosing a restaurant, think about its layout, menu, noise level, waiting times, and the helpfulness of the staff. Ask yourself:

  • Does the person with Alzheimer’s disease know the restaurant well?
  • Is it quiet or noisy most of the time?
  • Are tables easy to get to? Do you need to wait before being seated?
  • Is the service quick enough to keep the person from getting restless?
  • Does the restroom meet the person’s needs?
  • Are foods the person with Alzheimer’s likes on the menu?
  • Is the staff understanding and helpful?

Before going to the restaurant, decide if it is a good day to go. If it is, think about the best time to go. Earlier in the day may be best, so the person with Alzheimer’s is not too tired. Also, the restaurant may be less crowded, and service may be quicker. If you decide to go later, try to get the person to take a nap first.

Before you leave home, gather what you need. Helpful items may include utensils, a towel, wipes, or bathroom items.

At the Restaurant

  • Tell the waiter or waitress about any special needs, such as extra spoons, bowls, or napkins.
  • Ask for a table near the restroom and in a quiet area. Seat the person with his or her back to busy areas.
  • Help the person choose a meal, if needed. Suggest food you know the person likes. Read parts of the menu or show the person pictures of the food. Limit the number of choices.
  • Ask the server to fill glasses half full or leave the drinks for you to serve.
  • Order finger food or snacks to hold the attention of the person with Alzheimer’s.
  • Go with the person to the restroom. Go into the stall if the person needs help.

Participating in Spiritual Activities

Like you, the person with Alzheimer’s may have spiritual needs. If so, you can help the person stay part of his or her faith community. This can help the person feel connected to others and remember pleasant times. Here are some tips for helping a person with Alzheimer’s disease who has spiritual needs:

  • Involve the person in spiritual activities that he or she has known well. These might include worship, religious or other readings, sacred music, prayer, and holiday rituals.
  • Tell people in your faith community that the person has Alzheimer’s disease. Encourage them to talk with the person and show him or her that they still care.
  • Play religious or other music that is important to the person. It may bring back old memories. Even if the person with Alzheimer’s has a problem finding the right words to speak, he or she still may be able to sing songs or hymns from the past.

Traveling Overnight

Taking a person with Alzheimer’s disease on an overnight trip is a challenge. Traveling can make the person more worried and confused, so it’s important to think ahead. Here are some tips.

Plan Ahead

  • Talk with the person’s doctor about medicines to calm someone who gets upset while traveling.
  • Find someone to help you at the airport, train station, or bus station.
  • Keep important documents with you in a safe place. These include health insurance cards, passports, doctors’ names and phone numbers, a list of medicines, and a copy of the person’s medical records.
  • Pack items the person enjoys looking at or holding for comfort.
  • Travel with another family member or friend.
  • Take an extra set of clothing in a carry-on bag.

People with memory problems may wander around a place they don’t know well. In case someone with Alzheimer’s disease gets lost:

  • Make sure the person wears an ID bracelet or something else that tells others who he or she is.
  • Carry a recent photo of the person with you on the trip.

After You Arrive

  • Allow lots of time for each thing you want to do. Don’t plan too many activities.
  • Plan rest periods.
  • Follow a routine like the one you use at home. For example, try to have the person eat, rest, and go to bed at the same time he or she does at home.
  • Keep a well-lighted path to the toilet, and leave the bathroom light on at night.
  • Be prepared to cut your visit short if necessary.

Visiting Family and Friends

Spending time with family and friends is important to people with Alzheimer’s disease. They may not always remember who people are, but they often enjoy the company. Here are some tips to share with people you plan to visit:

  • Be calm and quiet. Don’t use a loud voice or talk to the person with Alzheimer’s as if he or she were a child.
  • Respect the person’s personal space, and don’t get too close.
  • Make eye contact and call the person by name to get his or her attention.
  • Remind the person who you are if he or she doesn’t seem to know you. Try not to say, “Don’t you remember?”
  • Don’t argue if the person is confused. Respond to the feelings that he or she expresses. Try to distract the person by talking about something different.
  • Remember not to take it personally if the person doesn’t recognize you, is unkind, or gets angry. He or she is acting out of confusion.
  • Have ready some kind of activity, such as a familiar book or photo album to look at. This can help if the person with Alzheimer’s is bored or confused and needs to be distracted. But be prepared to skip the activity if it is not needed.

Read about this topic in Spanish. Lea sobre este tema en español.

For More Information About Adapting Activities for People with Alzheimer’s

NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center
1-800-438-4380 (toll-free)
[email protected]
www.nia.nih.gov/alzheimers
The National Institute on Aging’s ADEAR Center offers information and free print publications about Alzheimer’s disease and related dementias for families, caregivers, and health professionals. ADEAR Center staff answer telephone, email, and written requests and make referrals to local and national resources.

Alzheimer’s Association
1-800-272-3900 (toll-free, 24/7)
1-866-403-3073 (TTY/toll-free)
[email protected]
www.alz.org

Alzheimer’s Foundation of America
1-866-232-8484 (toll-free)
[email protected]
www.alzfdn.org

Family Caregiver Alliance
1-800-445-8106 (toll-free)
[email protected]
www.caregiver.org

Citation

https://www.nia.nih.gov/health/adapting-activities-people-alzheimers-disease

Content reviewed: May 18, 2017

National Institutes of Health

 

Recognizing Alzheimer’s Disease

December 4, 2017

(Helpguide.org) Alzheimer’s Disease can be caught in the early stages—when the best treatments are available—by watching for telltale warning signs. If you recognize the warning signs in yourself or a loved one, make an appointment to see your physician right away. Brain imaging technology can diagnose Alzheimer’s early, improving the opportunities for symptom management.

Why Early Detection Can be Difficult

Alzheimer’s disease usually is not diagnosed in the early stages, even in people who visit their primary care doctors with memory complaints.

  • People and their families generally underreport the symptoms.
  • They may confuse them with normal signs of aging.
  • The symptoms may emerge so gradually that the person affected doesn’t recognize them.
  • The person may be aware of some symptoms but go to great lengths to conceal them.

Recognizing symptoms early is crucial because medication to control symptoms is most effective in the early stages of the disease and early diagnosis allows the individual and his or her family members to plan for the future. If you or a loved one is experiencing any of the following symptoms, contact a physician.

Alzheimer’s Warning Signs

Progressive memory loss

This is the hallmark of Alzheimer’s disease. Initially, only short-term memory is impaired, and the person merely seems forgetful. But because short-term memory is essential for absorbing new information, the impairment soon interferes with the ability to interact socially and perform one’s work. Long-term memory may be retained longer, often in great detail, but it becomes fragmented as the disease progresses. Toward the final stage, people with Alzheimer’s may be unable to recall their own names.

Decline in cognitive abilities

These are the “thinking” activities of reasoning—solving problems, making decisions, exercising judgment, and so on. Impairments of cognitive function can begin subtly as poor performance in an activity the person once did well. Poor judgment and lack of insight can lead to accidents.

Early in the disease, individuals may easily lose track of time; later, their disorientation becomes more pronounced and extends to places and people. The sense of time becomes more distorted as the disease progresses, and people may insist it’s time to leave immediately after arriving at a place or may complain of not having been fed as soon as a meal has ended.

Changes in mood and personality

These changes are often the most convincing evidence for families that something is wrong. Apathy is common, and many individuals lose interest in their usual activities. A person may become withdrawn, irritable, or inexplicably hostile.

Depression may also accompany Alzheimer’s, partly as a result of chemical changes in the brain caused by the disease itself and partly as an understandable psychological reaction to the loss of mental abilities. Symptoms of depression include loss of interest in previously enjoyable activities, change in appetite that sometimes leads to weight loss or gain, insomnia or oversleeping, loss of energy, and feelings of worthlessness. People with Alzheimer’s, though, seldom have feelings of excessive guilt or thoughts of suicide, which are often symptoms of depression.

Aphasia

This medical term describes an impairment in using and understanding language. Because speaking, writing, reading, and understanding speech involve different areas of the brain and different nerve networks, aphasia can be uneven, with some skills retained longer than others. For example, a person may be able to recognize written words flawlessly and yet fail to comprehend their meanings.

Typically, aphasia begins with word-finding difficulties. Unable to think of the right words, a person may try to cover up with long-winded descriptions that fail to reach the point, or he or she may angrily refuse to discuss the matter further. Substituting a similar-sounding word (“wrong” instead of “ring”) or a related word (“read” instead of “book”) is common. The person may ramble, stringing phrases together without expressing any real thought, or may forget all but a few words (which he or she may repeat over and over). In many cases, all language abilities are lost as dementia becomes severe, and people become mute.

Agnosia

The ability to process sensory information deteriorates, causing agnosia, a disorder in perception. Unable to comprehend the meaning of what they see, people with agnosia may run into furniture. They may believe a spouse is an impostor, become frightened by ordinary sounds, or fail to recognize their own reflection in a mirror. Agnosia can contribute to inappropriate behavior, such as urinating into a wastebasket.

Apraxia

The inability to perform basic motor skills such as walking, dressing, and eating a meal is known as apraxia. This is quite different from weakness or paralysis caused by a stroke. A person with apraxia has literally forgotten how to perform these activities. Usually, apraxia develops gradually, but in some cases, it begins abruptly. Apraxia may first be evident in fine hand movements, showing up in illegible handwriting and clumsiness in buttoning clothing. Everyday skills like using a phone or switching channels on a TV set may disappear. Eventually the ability to chew, walk, or sit up in a chair is lost.

Behavior problems

Troublesome changes in behavior are a common feature of the disease. Examples include being stubborn, resisting care, refusing to give up unsafe activities, pacing or hand-wringing, wandering, using obscene or abusive language, stealing, hiding things, getting lost, engaging in inappropriate sexual behavior, urinating in unsuitable places, wearing too few or too many clothes, eating inappropriate objects, dropping lit cigarettes, and so on. A particular behavior can disappear as a patient’s abilities further deteriorate (for example, verbal abuse declines as aphasia progresses), only to be replaced with new problems.

Catastrophic reaction

A strong emotional response to a minor problem is another symptom of the disease. Catastrophic reactions can involve crying inconsolably, shouting, swearing, agitated pacing, refusing to participate in an activity, or striking out at another person. The usual triggers include fatigue, stress, discomfort, and the failure to understand a situation. Essentially, a catastrophic reaction is the response of an overwhelmed, frightened person who feels cornered and is trying to protect himself or herself. The behavior is caused by brain dysfunction and is mostly beyond the person’s control.

Sundowning

This term refers to behavior problems that worsen in the late afternoon and evening. No one knows exactly why sundowning occurs, though there are several theories. Because people are tired at the end of the day, their tolerance for stress declines, and a minor problem can generate a major outburst. An already confused person may be overstimulated when several people are in the house, dinner preparations are under way, and the television is on. Dim light may also contribute to a person’s misinterpretation of visual information.

Psychosis

Roughly four out of 10 people with Alzheimer’s disease will experience psychosis, which is marked by recurring delusions or hallucinations. While this most often occurs in late-onset Alzheimer’s and appears to run in families, specific genes associated with it have not yet been pinpointed. The disordered thinking that prompts delusions and hallucinations occurs sporadically, which tends not to be true in other forms of psychosis.

A woman troubled by delusions might call the police to report strangers in the house, talk to herself in the mirror, or talk to people on TV. Hallucinations are often visual—seeing jagged rocks or water where floorboards actually are—but may be auditory (phantom voices), as well.

Diagnosing Alzheimer’s Disease

No blood test, brain scan, or physical exam can definitively diagnose Alzheimer’s disease. And because so many conditions can produce symptoms resembling those of early Alzheimer’s, reaching the correct diagnosis is complicated.

Finding a physician

Refusing to see the doctor

Families sometimes encounter a major stumbling block when the person whose mental status has aroused concern refuses to see a doctor. Often the person denies having cognitive difficulties and resists visiting a doctor for evaluation. In this case, arranging a doctor’s visit for a more general purpose, such as a routine physical exam, or for a specific complaint, such as a headache, might pro- vide an opportunity to begin the Alzheimer’s evaluation. Call the doctor in advance to inform him or her that this is one purpose for the visit.

It’s important to find a physician experienced in Alzheimer’s diagnosis. If a physician diagnoses Alzheimer’s after only a cursory examination, get a second opinion. A complete evaluation by a specialist is essential to exclude other health problems that could cause cognitive problems. Your family physician may do part of the evaluation and then recommend a neurologist, geriatrician, or other specialist to complete it. Your local Alzheimer’s Association chapter, medical school, or hospital can also identify appropriate specialists.

Before scheduling an appointment, ask what diagnostic procedures will be used. If the evaluation does not sound comprehensive, seek another physician.

Once a diagnosis is made, find a physician experienced in providing ongoing care to meet the changing needs of someone with Alzheimer’s disease. The doctor who makes the diagnosis may not be the one who will oversee the long-term care. So, try to choose a physician who’s knowledgeable about managing dementing illnesses and able to communicate well with family members.

What to expect

A complete evaluation will take more than a day and is generally done on an outpatient basis. In most areas, the evaluation can be done locally, and tests can be spread over several days to avoid tiring the person being examined. Other specialists besides the treating physician may be involved in the evaluation, including technicians, nurses, psychologists, occupational or physical therapists, social workers, and often psychiatrists.

It will take several days before test results are reported and the physician reviews them. When the doctor discusses the findings, be prepared for an equivocal diagnosis. Physicians are often hesitant to diagnose Alzheimer’s disease without first observing that the dementia is progressive. This means repeating the evaluation, usually in six to 12 months. At this later time, a more confident diagnosis is sometimes possible, but when cognitive changes are gradual, the doctor may recommend repeated testing at yearly intervals.

The Evaluation Process

To help alleviate any stress associated with your visit to the physician, it’s best to be as prepared as possible. For instance, be sure that whoever goes with the individual being evaluated is familiar with his or her medical history, current symptoms, and concerns.

Beforehand, write down any issues you want to mention at the visit. If the person is in an advanced stage of dementia, you may want to bring a music player with headphones to play calming music, or a familiar soft item that can be stroked or held.

Personal medical history

The physician will need the following:

  • A detailed description of changes in mental abilities, personality, mood, and behavior, including when the changes began and how they have affected the individual’s ability to function (consider bringing letters, checkbooks, household lists, or other materials that illustrate changes in cognition)
  • Information about physical complaints or symptoms, such as loss of coordination, sudden vision problems, or weakness
  • A complete medical history, including injuries and recent illnesses
  • A list of medications the patient is taking, including nonprescription drugs and herbal supplements
  • Information about the medical problems of family members, especially relatives with a similar illness.

This may seem like a lot of information, but the person’s history enables the physician to construct a list of possible diagnoses that will guide the medical evaluation that follows. For example, a physician who usually schedules a computed tomography (CT) or magnetic resonance imaging (MRI) scan of the brain as a final test might order one immediately for someone with abrupt mental changes and difficulty walking. These symptoms might indicate excess cerebrospinal fluid around the brain, a condition called normal-pressure hydrocephalus (see “Brain scans,” below). Prompt detection and treatment could prevent permanent damage to the brain.

Physical examination

Disorders as diverse as heart failure, liver disease, kidney failure, thyroid disorders, and respiratory diseases can cause dementia-like changes. What’s more, elderly people don’t always have typical symptoms. The sensation of pain is often dulled in the older person, for example, and it’s not unusual for confusion, rather than chest pain, to be the main symptom of a heart attack.

Therefore, the physician will evaluate the cardiovascular system, lungs, and other organs for any signs of abnormalities. Because sensory losses can add significantly to a person’s cognitive difficulties, the doc- tor will also test vision and hearing. The physician will also pay close attention to the nervous system, because neurologic abnormalities may signal a brain disorder other than Alzheimer’s disease.

Muscle strength, coordination, reflexes, senses, eye movement, and the pupils’ reaction to light can tell the physician about the health of specific areas of the brain. For example, unequal reflexes or weakness on one side of the body suggest localized brain damage (perhaps from stroke or tumor), while tremors or other involuntary movements may indicate a degenerative disorder such as Parkinson’s disease. These types of abnormalities are not usually features of early Alzheimer’s disease.

Mental status testing, which is part of the neurologic examination, is crucial in diagnosing dementia and delirium. The physician will ask the person to perform simple mental exercises such as counting backward by sevens, obeying written instructions, memorizing words, and copying designs. This testing of mental status allows the physician to assess orientation, memory, comprehension, language skills, and ability to perform simple calculations.

Diagnostic Tests

The physician will order a complete blood count and blood chemistry tests to detect anemia, infection, diabetes, and kidney and liver disorders. Other lab work will include routine tests for thyroid function, vitamin B12 deficiency, and elevated blood calcium, as well as a test for syphilis. If the physician suspects a specific medical problem, she may order additional tests. For example, a patient who might have been exposed to the AIDS virus will be encouraged to have an HIV test.

Brain scans

A brain scan—using either computed tomography (CT) or magnetic resonance imaging (MRI)—is generally included in the standard evaluation for Alzheimer’s disease and other forms of dementia.

CT and MRI scans, which reveal the anatomic structure of the brain, are used to rule out such problems as tumor, hemorrhage, stroke, and hydrocephalus, which can masquerade as Alzheimer’s disease. These scans can also show the loss of brain mass associated with Alzheimer’s disease and other dementias. In Alzheimer’s disease, the region of the brain known as the hippocampus may be disproportionately atrophied.

Other brain scans may be performed if CT and MRI scans are inconclusive. Positron emission tomography (PET) and single-photon emission computed tomography provide images of brain activity based on blood flow, oxygen consumption, or glucose use. These techniques can help narrow down a diagnosis by revealing deficits common in Alzheimer’s disease that are distinct from findings for other dementias, such as frontotemporal lobar degeneration and dementia with Lewy bodies. However, even these scans cannot reveal the microscopic changes in brain tissue that characterize Alzheimer’s disease. Thus, they can’t identify the disease with certainty.

Fortunately, the diagnostic capability of brain scans is improving. Especially promising is a kind of PET scan that uses a chemical tracer that binds specifically to amyloid deposits in the brain, allowing them to show up clearly on the brain scans. Today, at least 17 centers in North America, as well as 21 others throughout the world, have successfully used one such tracer, Pittsburgh Compound-B (PiB PET), in thousands of subjects. So far, this technique is being used only in research studies. Experts anticipate PET scans with similar tracer compounds will be in general use within the next several years. These tests may help doctors diagnose the disease before symptoms appear, as well as assess new treatments.

Researchers also hope to perfect MRI techniques that can enhance physicians’ ability to measure brain atrophy and diagnose Alzheimer’s with greater accuracy. Functional MRI (fMRI), which records blood flow changes linked to brain activity, may prove helpful in distinguishing among different forms of dementia.

EEG

An electroencephalogram (EEG) may be done to detect abnormal brain-wave activity. Although the EEG is usually normal in people with mild Alzheimer’s disease and many other types of dementia, EEG abnormalities do occur in delirium and Creutzfeldt-Jakob disease, which is a cause of dementia.

Lumbar puncture

If hydrocephalus (excess cerebrospinal fluid in the area around the brain) or infection of the central nervous system is suspected, the doctor may recommend a lumbar puncture to detect increased pressure or inflammatory cells in the spinal fluid. Biochemical markers for Alzheimer’s—including amyloid plaques, neurofibrillary tangles, and neurodegeneration—can also be detected. These markers are sensitive detectors of Alzheimer’s pathology, and specific for them. While tests for these markers are not commonplace today, experts anticipate that they will become a standard part of diagnostic testing in the future.

Neuropsychological testing

Psychologists or neuropsychologists (psychologists with specialized training in brain disorders) may administer comprehensive neuropsychological tests, either as interviews or as paper-and-pencil tests. These tests, which take several hours, are used to determine what areas of cognitive function are impaired and what areas are still intact. They assess memory, reasoning, writing, vision-motor coordination, comprehension, and the ability to express ideas. A doctor may also give other tests to identify depression and other mood problems.

Functional assessment

Cognitive problems affect a person’s daily functioning in many different and sometimes surprising ways. An objective assessment can help determine what a person can and cannot do. This information is invaluable for caregivers, especially when the individual has other health problems that complicate the situation, such as arthritis or poor vision. If the person seems to have Alzheimer’s, a functional assessment can help determine its stage, which can help family members decide what type of care and support services are needed.

In a functional assessment, the therapist asks a family member to fill out a questionnaire about the person’s ability to perform activities of daily living. By noting what activities the person completes successfully, partially, or not at all, the therapist can suggest ways of helping the individual accomplish these tasks, thereby preserving as much of the patient’s independence as possible.

Psychosocial evaluation

The psychosocial evaluation is usually conducted by a social worker and is designed to help the individual’s family plan for care. The social worker will discuss the emotional, physical, and financial impact of Alzheimer’s disease and guide family members through an evaluation of their circumstances. Social workers can also help coordinate community services, suggest alternatives to the person’s present living arrangements, and provide a list of resources and locally available services.

Specialized Tests

The doctor may call for a blood test in cases where there’s a family history of early-onset Alzheimer’s. To date, genetic testing offers diagnostic value only in cases of early-onset familial Alzheimer’s disease. Searching for genetic mutations in individuals who do not have a strong family history of Alzheimer’s and who did not show symptoms before age 65 is fruitless. The test for the ApoE genotype can increase diagnostic confidence somewhat, but it isn’t recommended for screening purposes.

Adapted with permission from A Guide to Coping with Alzheimer’s Disease, a special health report published by Harvard Health Publications.

Citation

https://www.helpguide.org/harvard/recognizing-and-diagnosing-alzheimers.htm

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Lifelong Strategies for Preventing Dementia

December 4, 2017

(Mayo Clinic) Q: Do puzzles and other activities or apps that claim to lower one’s risk of developing dementia actually work? Are there other things people can do to decrease the risk?

A: Doing activities that stimulate your brain may reduce your risk of developing dementia. But it’s more complex than taking up puzzles or computer games at age 65. Research suggests that the value of cognitively stimulating activities builds up over a lifetime. That means acquiring a good education; working in a job that is mentally stimulating; and engaging in pastimes, hobbies and social activities that are mentally engaging are all part of reducing your risk for developing dementia.

For example, studies have shown that the more years of education a person has, the lower the dementia risk. This appears to be because people who spend more time engaged in learning across their lifetime tend to develop more robust networks of nerve cells and connections between those nerve cells within their brains. Those networks are better equipped to handle the cell damage that can happen as a result of brain disorders that may lead to dementia.

Before continuing, it would be wise to define “dementia.” Dementia describes symptoms that affect a person’s memory, thinking and social abilities to the point that it’s difficult to perform normal daily activities. Dementia is caused by brain disease. Alzheimer’s disease is the most common and one of the most well-known. Diseases that affect the blood vessels the same diseases that cause heart attacks and stroke are the second most common cause of dementia.

So, in addition to participating in activities that are mentally engaging, avoiding conditions that increase heart attacks and strokes also reduces your risk of dementia. Maintaining healthy levels of cholesterol and blood pressure, avoiding diabetes, not smoking, staying at a healthy weight and exercising regularly all have been shown to improve cognitive health later in life. Again, however, it’s best if you make them components of a healthy lifestyle in your younger years and sustain them as you get older. That’s because all of them affect the health of the blood vessels in your brain.

If your brain blood vessels stay in good condition throughout your young adulthood and midlife, they are more likely to be able to remain healthy as you age. If the health of those blood vessels deteriorates when you are younger, it’s difficult to mend the damage later. And damage to the brain’s blood vessels can be a factor in dementia.

This is not to say that incorporating healthy choices into your lifestyle if you are older won’t make any difference. They can positively affect your cognitive and physical health. But to gain the most benefit for your brain, it’s best to have them in place as soon as possible.

Social interaction is an area where anyone can make a change at any time, and it will likely have positive cognitive benefits. Regularly interacting with others family, friends, neighbors, co-workers, community members can lift your mood, improve your outlook and engage your brain. All of these positively affect your cognitive abilities, and being socially engaged has been shown to ease symptoms of dementia.

Citation

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Tips for Alzheimer’s Caregivers: Preparing for the Road Ahead and Getting the Help You Need

November 26, 2017

(Helpguide.org) Caring for someone with Alzheimer’s disease or another type of dementia impacts every aspect of your daily life. As an Alzheimer’s patient loses one ability after another, a caregiver faces tests of stamina, problem solving, and resiliency. Maintaining your emotional and physical fitness is crucial, not just for you but also for the person you’re caring for. Preparing yourself, understanding your loved one’s experience, and seeking support from others can help you succeed on the caregiving journey.

The Alzheimer’s and Dementia Care Journey

Caring for someone with Alzheimer’s disease or dementia can be a long, stressful, and intensely emotional journey. But you’re not alone. In the United States, there are about 15 million people caring for someone with dementia, and millions of others around the world. As there is currently no cure for Alzheimer’s disease—and only limited medical treatments available for the symptoms—it is your caregiving that can make the biggest difference to your loved one’s quality of life. That is a remarkable gift.

However, caregiving can also become all-consuming. As your loved one’s cognitive, physical, and functional abilities diminish over a period of years, it’s easy to become overwhelmed and neglect your own health and well-being. The burden of caregiving can put you at increased risk for significant health problems and an estimated 30 to 40 percent of dementia caregivers will experience depression, high levels of stress, or burnout. Nearly all Alzheimer’s or dementia caregivers will at some time experience sadness, anxiety, loneliness, and exhaustion. Seeking help and support along the way is not a luxury for caregivers; it’s a necessity.

Just as each individual with Alzheimer’s disease progresses differently, so too can the caregiving experience vary widely from person to person. However, there are strategies that can help make the caregiving journey as rewarding as it is challenging. Learning all you can about what is happening and what to expect on the Alzheimer’s journey will not only help your loved one, but is also the first step towards protecting your own mental and physical health.

The Challenges and Rewards of Alzheimer’s Care

Caring for a person with Alzheimer’s disease can often seem to be a series of grief experiences as you watch your loved one’s memories disappear and skills erode. The person with Alzheimer’s will change and behave in different, sometimes disturbing or upsetting ways. For both caretakers and their patients, these changes can produce an emotional wallop of confusion, anger, and sadness.

As the disease advances, your loved one’s needs will increase and your caregiving responsibilities will become more challenging. At the same time, the ability of your loved one to show appreciation for all your hard work will diminish. Caregiving can literally seem like a thankless task. For many, though, a caregiver’s long journey includes not only challenges, but also many rich, life-affirming rewards.

Challenges of Alzheimer’s care:

  • Overwhelming emotions as capabilities lessen
  • Fatigue and exhaustion as caregiving demands increase
  • Isolation and loneliness as independence disappears
  • Financial and work complications as costs rise and resources are challenged

Rewards of Alzheimer’s care:

  • Bonds deepen through care, companionship, and service
  • Problem solving and relationship skills grow through experience
  • New relationships form through education and support
  • Unexpected rewards develop through compassion and acceptance

Preparing for the Road Ahead

The more you learn about your loved one’s disease and how it will progress over the years, the better you’ll be able to prepare for future challenges, reduce your frustration, and foster reasonable expectations. In the early stages of Alzheimer’s, for example, you can support your loved one’s independence and self-care, but the person’s cognitive and physical regression means he or she will ultimately require 24-hour care.

Though it may be hard to contemplate such a difficult outlook, the sooner you put plans in place, the more your loved one can be involved in the decision-making process. Paying for long-term care can be a major source of stress, so it’s important to research all your options as early as possible. Consult with the patient’s medical team and other family members to make legal and financial arrangements and determine the long-term care options that are best suited to you and your loved one.

Developing Your Own Personal Support Plan Ahead of Time

Balancing the enormous task of caring for a cognitively-impaired adult with your other responsibilities requires skill, attention, and meticulous planning. By focusing so diligently on your loved one’s needs, it’s easy to fall into the trap of neglecting your own health. But that will not only hurt yourself, but also hurt the person you’re trying to care for. If you’re not getting the physical and emotional support you need, you won’t be able to provide the best level of care, and you face becoming overwhelmed.

Ask for help. It’s important to reach out to other family members, friends, or volunteer organizations to help with the daily burden of caregiving. Accepting help for mundane tasks such as grocery shopping and cleaning can free you up to spend more quality time with the patient. When someone offers to help, let them. You’re not being neglectful or disloyal to your loved one. Caregivers who take regular time away not only provide better care, they also find more satisfaction in their caretaking roles.

Learn or update caregiving skills. Being thrust into the role of caregiver doesn’t come with an instruction manual, but there are books, workshops, and online training resources that can teach you the skills you need. Learn all you can about symptoms, treatment, and behavior management. As the disease progresses and challenges change, you’ll need to update your skillset and find new ways of coping.

Join a support group. You’ll find that you’re not alone and you’ll be able to learn from the experiences of others who have faced the same challenges. Connecting with others who know first-hand what you’re going through can also help reduce feelings of isolation, fear, and hopelessness.

Learn how to manage stress. Caregiving for a loved one with dementia can be one of the most stressful tasks you’ll undertake in life. To combat this stress, you need to activate your body’s natural relaxation response through techniques such as deep breathing, meditation, rhythmic exercise, or yoga. Fitting these activities into your life can help reduce the stress of caregiving and boost your mood and energy levels.

Make use of available resources. There are a wealth of community and online resources to help you prioritize your efforts and provide effective care. Start by finding the Alzheimer’s association in your country. These organizations offer practical support, helplines, advice, and training for caregivers and their families. They can also put you in touch with local support groups. See Resources and References section below for a directory of associations.

Plan for your own care. Visit your doctor for regular checkups and pay attention to the signs and symptoms of excessive stress. It’s easy to abandon the people and activities you love when you’re mired in caregiving, but you risk your health and peace of mind by doing so. Take time away from caregiving to maintain friendships, social contacts, and professional networks, and pursue the hobbies and interests that bring you joy.

Signs of Caregiver Stress and Burnout

No matter how strong and resilient you are, you’re still likely to have problems with certain aspects of Alzheimer’s or dementia care. The stress of day-to-day care, watching your loved one’s health deteriorate, and having to make difficult decisions about long-term care can leave anyone feeling overwhelmed and exhausted. Recognizing the signs of caregiver stress and burnout is the first step to dealing with the problem.

10 Signs of Caregiver Stress

If you experience any of these signs of stress on a regular basis, make time to talk to your doctor.

1. Denial about the disease and its effect on the person who has been diagnosed. “I know Mom is going to get better.”

2. Anger at the person with Alzheimer’s, anger that no cure exists, or anger that people don’t understand what’s happening. “If he asks me that one more time I’ll scream!”

3. Social withdrawal from friends and activities that once brought pleasure. “I don’t care about getting together with the neighbors anymore.”

4. Anxiety about the future. “What happens when he needs more care than I can provide?”

5. Depression that begins to break your spirit and affects your ability to cope. “I don’t care anymore.”

6. Exhaustion that makes it nearly impossible to complete necessary daily tasks. “I’m too tired for this.”

7. Sleeplessness caused by a never-ending list of concerns. “What if she wanders out of the house or falls and hurts herself?”

8. Irritability that leads to moodiness and triggers negative responses and actions. “Leave me alone!”

9. Lack of concentration that makes it difficult to perform familiar tasks. “I was so busy, I forgot we had an appointment.”

10. Health problems that begin to take a mental and physical toll. “I can’t remember the last time I felt good.”

Source: Alzheimer’s Association

When prolonged and excessive stress from caring for a loved one with Alzheimer’s or dementia leaves you feeling emotionally, mentally, and physically exhausted, you may be facing burnout. Burnout reduces your productivity and saps your energy, leaving you feeling helpless, hopeless, angry, and resentful. Eventually, you may feel like you have nothing more to give.

The warning signs of caregiver burnout include:

  • Excessive stress and tension
  • Debilitating depression
  • Persistent anxiety, anger, or guilt
  • Extreme irritability or anger with the dementia patient
  • Decreased overall life satisfaction
  • Relationship conflicts and social isolation
  • Lower immunity and greater need for healthcare services
  • Excessive use of medications, drugs, or alcohol

Burnout can damage your health and the health of the person you’re caring for, so if you recognize the signs, it’s important to take action right away.

Coping with Stress and Burnout

No matter the day-to-day demands of caregiving for a patient with Alzheimer’s or dementia, it’s imperative that you carve out time for your own self-care. These tips can help:

Seek regular respite care. You cannot do it all alone. Ask other family members, friends, or members of your place of worship for help with respite care so you can get a much needed break. You can also seek help from volunteer organizations, support groups, day care programs, and residential respite care facilities. Schedule frequent breaks throughout the day, take time out to pursue hobbies and interests, and stay on top of your own health needs. Seek professional help if you recognize you’re exhibiting any warning signs of caregiver burnout.

Get moving. Regular exercise not only keeps you fit, it releases endorphins that can really boost your mood. Aim for at least 30 minutes of exercise on most days. If it’s difficult to get away for that long at once, break the time up into 10 minute sessions sprinkled throughout the day. Take a walk or jog outside, dance to your favorite music, work out to an exercise DVD, or cycle to the store. Taking a group exercise class or working out with friends can give you a valuable social outlet as well.

Talk to someone. Talk to a trusted friend, family member, clergy member, or therapist, about how you feel and what you’re going through. The person you talk to doesn’t have to be able to solve your problems, he or she just has to be a good listener. The simple act of talking face-to-face with someone who cares can be extremely cathartic. Opening up won’t make you a burden to others. In fact, most friends will be flattered that you trust them enough to confide in them, and it will only strengthen your bond.

Take time to play. In the early stages of Alzheimer’s disease, include your loved one in short walks, board games, or jigsaw puzzles. Join an online scrabble tournament, practice your golf swing, or play with a pet. A daily dose of fun is good medicine, and doesn’t require money, a car, or huge blocks of time.

Try something new. Challenge yourself to learn a new skill while you are “on the job.” Order a self-paced foreign language program or try an exercise video game. From tennis to golf to pitching a strike, so-called “exergames” offer living room-friendly activities for every age and skill level. With just a few minutes of practice each day, you can flex mental muscle and relieve harmful stress.

See the funny side. Humor is a well-known antidote to stress, sadness, illness, and boredom. Give yourself permission to chuckle at the absurdities you and your loved one experience, and surround yourself with laughter. Instead of heavy dramas on TV or video, go for a hearty belly laugh by watching episodes of your favorite sitcom. Your infectious good mood can help replenish your inner resources and sooth your loved one.

Making Time for Reflection Can Help with Acceptance

One of the biggest challenges as a caretaker for someone with Alzheimer’s or dementia is to accept what is happening to your loved one. At each new stage of the disease, you have to alter your expectations about what your loved one is capable of. By accepting each new reality and taking time to reflect on these changes, you can better cope with the emotional loss, and deepen the feelings of satisfaction and love in your role as caretaker.

Keep a daily journal to record and reflect on your experiences. By journaling your thoughts, you can mourn losses, celebrate successes, and look for those thought patterns that keep you from acting in the present.

Count your blessings. A daily gratitude list can chase away the blues and let you focus on what your loved one is still capable of, rather than the abilities he or she has lost.

Celebrate what is possible. Your loved one still has many abilities. Structure activities to invite participation on whatever level is possible, and you will both find real enjoyment.

Try to envision your loved one’s world. Imagine not being able to remember and do life’s simple tasks. By valuing what your loved one is able to give, you can find satisfaction on even the toughest days.

Practice relaxation techniques. Meditation, deep breathing, visualization, mindfulness, yoga, or rhythmic exercise can calm, restore, and promote happiness. Experiment with different techniques to find the ones that work best for you.

Improve emotional awareness. Remaining engaged, focused, and calm in the midst of such tremendous responsibility can challenge even the most capable caregivers. By developing your emotional awareness skills, however, you can relieve stress, experience positive emotions, and bring new peace and clarity to your caretaking role.

Tap into the rewards of connecting with the person you’re caring for

Even when the person you’re caring for can no longer verbally express love or appreciation, you can find a deeper sense of reward in your role as caregiver by making time each day to really connect with the person. Avoid all distractions and focus fully on the person. Make eye contact (if that’s possible), hold the person’s hand or stroke his or her cheek, and talk in a calm, reassuring tone of voice. When you connect in this way, you’ll experience a process that boosts your mood, reduces stress, and supports your physical and emotional well-being. And it can also have the same effect on your loved one.

How to Help an Alzheimer’s or Dementia Caregiver

If a friend or family member is caring for someone with Alzheimer’s or dementia, it’s important to offer all the help and support you can.

Don’t wait to be asked to help. Many caregivers find it difficult to ask others for help, no matter how much they may need it, so make the offer. And when you do, be specific. As well as simply asking, “What can I do to help?” make suggestions like, “I’m free tomorrow afternoon, can I sit with the patient while you take a break?” or “What can I get you from the grocery store today?” Helping out with even the most simple or mundane chores can free the caregiver up to spend more quality time with the patient or take a break to recharge his or her batteries.

Be a friend. Caregivers are prone to withdrawing from family and friends but they still need regular contact with the outside world. Phone calls, texts, or emails are fine, but nothing beats a personal visit to lift a caregiver’s mood. Again, don’t wait to be asked; be the one to reach out.

Be a good listener. Venting frustrations about caregiving can be a great stress reliever. Listen to the caregiver’s fears and concerns without judging.

Show your gratitude. If the caregiver is a sibling looking after your parent, for example, it’s important to express your gratitude. The person with mid- or late-stage Alzheimer’s or dementia may not able to show appreciation to the caretaker so it’s important other family members recognize the caregiver’s hard work and sacrifice and regularly show their appreciation. While a card or a simple “Thank you” can go a long way, when accompanied by the offer of some respite, it can be a blessing.

Recognize the signs of caregiver stress and encourage the caregiver to focus more on his or her own health and well-being.

Related Articles

Caregiver Stress and Burnout: Tips for Regaining Your Energy, Optimism, and Hope

Family Caregiving: Tips for Making Family Caregiving Easier and More Rewarding

Living with Dementia: Coping Tips & Strategies for Both You and Your Family

Care for the Caregiver: Part 1 (Video)

Care for the Caregiver: Part 2 (Video)

Dementia care specialist Teepa Snow discusses the fear of dementia and dealing with the challenges of caring for a loved one. (YouTube/Senior Helpers National)

Caregiver Support

Alzheimer’s Associations – A worldwide directory of Alzheimer’s associations that offer information, advice, and support for caregivers. (Alzheimer’s Disease International)

Family Care Navigator – For caregivers in the U.S., a state-by-state resource to help you locate services and other resources. (Family Caregiver Alliance)

Caregiver Action Plan – Create a personalized action plan for caregiving and link to information, support, and local resources. (Alzheimer’s Association)

Alzheimer’s Caregiving: How to Ask for Help – Suggestions on how to engage family and friends in helping out with patient care. (Mayo Clinic)

Caregiver’s Stress Check – Tests your stress and provides recommendations for addressing common caregiver’s issues. (Alzheimer’s Association)

Caregivers and Mental Health

Depression and Caregiving – Describes the symptoms of caregiver depression and offers suggestions on what to do for yourself if you are depressed as a result of caregiving. (Family Caregiver Alliance)

Dementia, Caregiving and Controlling Frustration – Discusses causes of frustration, warning signs that frustration is occurring, and several methods caregivers can use to help control or alleviate their frustrations. (Family Caregiver Alliance)

Changes to Your Relationship – Information about how the caregiver’s relationships may change: intimacy with the patient, and closeness to family and friends, with tips for resolving family conflicts. (Alzheimer’s Association)

Preventing Caregiver Burnout

Preventing Caregiver Burnout – Caregiver burnout is something you may not notice, but people you know may notice changes in you and express their concern. (Area Agency on Aging)

PDF version

Citation

https://www.helpguide.org/articles/alzheimers-dementia-aging/tips-for-alzheimers-caregivers.htm

Authors: Lawrence Robinson, Melissa S. Wayne, M.A. and Jeanne Segal, Ph.D. Last updated: October 2017.

©Helpguide.org. All rights reserved.

 

Alzheimer’s: Tips to Make Holidays More Enjoyable

November 17, 2017

(Mayo Clinic) Holidays can be bittersweet for families affected by Alzheimer’s. Try these simple tips to make the holidays less disruptive and more pleasant for everyone.

If you’re like many who are caring for a loved one with dementia, the holiday season may not feel so merry. Memories of better times may surface as reminders of what you’ve lost or what has changed. At a time when you believe you should be happy, you may instead find that stress, disappointment and sadness prevail.

At the same time, you may think that you should live up to expectations of family traditions and how things ought to be. As a caregiver, it isn’t realistic to think that you will have the time or the energy to participate in all of the holiday activities as you once did.

Yet, by adjusting your expectations and modifying some traditions, you can still find meaning and joy for you and your family. Here are some ideas.

Keep it Simple at Home

If you’re caring for a loved one who has Alzheimer’s at home:

  • Make preparations together. If you bake, your loved one may be able to participate by measuring flour, stirring batter or rolling dough. You may find it meaningful to open holiday cards or wrap gifts together. Remember to concentrate on the process, rather than the result.
  • Tone down your decorations. Blinking lights and large decorative displays can cause disorientation. Avoid lighted candles and other safety hazards, as well as decorations that could be mistaken for edible treats — such as artificial fruits.
  • Host quiet, slow-paced gatherings. Music, conversation and meal preparation all add to the noise and stimulation of an event. Yet for a person who has Alzheimer’s, a calm and quiet environment usually is best. Keep daily routines in place as much as possible and, as needed, provide your loved one a place to rest during family get-togethers.

Be Practical Away from Home

If your loved one lives in a nursing home or other facility:

  • Celebrate in the most familiar setting. For many people who have Alzheimer’s, a change of environment — even a visit home — can cause anxiety. Instead of creating that disruption, consider holding a small family celebration at the facility. You might also participate in holiday activities planned for the residents.
  • Minimize visitor traffic. Arrange for a few family members to drop in on different days. Even if your loved one isn’t sure who’s who, two or three familiar faces are likely to be welcome, while nine or 10 people may be overwhelming.
  • Schedule visits at your loved one’s best time of day. People who have Alzheimer’s tire easily, especially as the disease progresses. Your loved one may appreciate morning and lunchtime visitors more than those in the afternoon or evening.

Care for Yourself

Consider your needs, as well as those of your loved one. To manage your expectations of yourself:

  • Pick and choose. Decide which holiday activities and traditions are most important, and focus on those you enjoy. Remember that you can’t do it all.
  • Simplify. Bake fewer cookies. Buy fewer gifts. Don’t feel pressured to display all of your holiday decorations or include a handwritten note with each holiday card. Ask others to provide portions of holiday meals.
  • Delegate. Remember family members and friends who’ve offered their assistance. Let them help with cleaning, addressing cards and shopping for gifts. Ask if one of your children or a close friend could stay with your loved one while you go to a holiday party.

Trust your Instincts

As a caregiver, you know your loved one’s abilities best. You also know what’s most likely to agitate or upset your loved one. Resist pressure to celebrate the way others may expect you to. Remember, you can’t control the progress of Alzheimer’s or protect your loved one from all distress — but by planning and setting firm boundaries, you can avoid needless holiday stress and enjoy the warmth of the season.

Citation

By Mayo Clinic staff

http://www.mayoclinic.com/health/alzheimers/HQ00213

© 1998-2016 Mayo Foundation for Medical Education and Research (MFMER).

 

What You May Feel about Being a Family Caregiver: Tips for Making it Easier

November 9, 2017

(Helpguide.org) As a family caregiver for an ailing parent, child, spouse, or other loved one, you’re likely to face a host of new responsibilities, many of which are unfamiliar or intimidating. At times, you may feel overwhelmed and alone. But despite its challenges, caregiving can also be extremely rewarding. And there are a lot of things you can do to make the caregiving process easier and more pleasurable for both you and your loved one. These tips can help you get the support you need while caring for someone you love in way that can benefit both of you.

What is Family Caregiving?

As life expectancies increase, medical treatments advance, and increasing numbers of people live with chronic illness and disabilities, more and more of us find ourselves caring for a loved one at home. Whether you’re taking care of an aging parent, a handicapped spouse, or looking after a child with a physical or mental illness, providing care for a family member in need is an act of kindness, love, and loyalty. Day after day, you gift your loved one your care and attention, improving their quality of life, even if they’re unable to express their gratitude.

Regardless of your particular circumstances, being a family caregiver is a challenging role and likely one that you haven’t been trained to undertake. And like many family caregivers, you probably never anticipated you’d be in this situation. However, you don’t have to be a nursing expert, a superhero, or a saint in order to be a good family caregiver. With the right help and support, you can be an effective, loving caregiver without having to sacrifice yourself in the process. And that can make family caregiving a more rewarding experience—for both you and your loved one.

New to Family Caregiving?

Learn as much as you can about your family member’s illness or disability and about how to be a caregiver. The more you know, the less anxiety you’ll feel about your new role and the more effective you’ll be.

Seek out other caregivers. It helps to know you’re not alone. It’s comforting to give and receive support from others who understand exactly what you’re going through.

Trust your instincts. Remember, you know your family member best. Don’t ignore what doctors and specialists tell you, but listen to your gut, too.

Encourage your loved one’s independence. Caregiving does not mean doing everything for your loved one. Be open to technologies and strategies that allow your family member to be as independent as possible.

Know your limits. Be realistic about how much of your time and yourself you can give. Set clear limits, and communicate those limits to doctors, family members, and other people involved.

Tip 1: Accept your Feelings

Caregiving can trigger a host of difficult emotions, including anger, fear, resentment, guilt, helplessness, and grief. It’s important to acknowledge and accept what you’re feeling, both good and bad. Don’t beat yourself up over your doubts and misgivings. These feelings don’t mean that you don’t love your family member—they simply mean you’re human.

What you may feel about being a family caregiver

  • Anxiety and worry – You may worry about how you will handle the additional responsibilities of caregiving and what will happen to your family member if something happens to you. You may also fear what will happen in the future as your loved one’s illness
  • Anger or resentment – You may feel angry or resentful toward the person you’re caring for, even though you know it’s irrational. Or you might be angry at the world in general, or resentful of other friends or family members who don’t have your responsibilities.
  • Guilt – You may feel guilty for not doing more, being a “better” caregiver, having more patience, accepting your situation with more equanimity, or in the case of long distance caregiving, not being available more often.
  • Grief – There are many losses that can come with caregiving (the healthy future you envisioned with your spouse or child; the goals and dreams you’ve had to set aside). If the person you’re caring for is terminally ill, you’re also dealing with that grief.

Even when you understand why you’re feeling the way you do, it can still be upsetting. In order to deal with your feelings, it’s important to talk about them. Don’t keep your emotions bottled up, but find at least one person you trust to confide in, someone who’ll listen to you without interruption or judgment.

Tip 2: Find Caregiver Support

Even if you’re the primary family caregiver, you can’t do everything on your own, especially if you’re caregiving from a distance (more than an hour’s drive from your family member). You’ll need help from friends, siblings, and other family members, as well as health professionals. If you don’t get the support you need, you’ll quickly burn out—which will compromise your ability to provide care.

But before you can ask for help, you need to have a clear understanding of your family member’s needs. Take some time to list all the caregiving tasks required, being as specific as possible. Then determine which activities you are able to meet (be realistic about your capabilities and the time you have available). The remaining tasks on the list are ones you’ll need to ask others to help you with.

Asking family and friends for help

It’s not always easy to ask for help, even when you desperately need it. Perhaps you’re afraid to impose on others or worried that your request will be resented or rejected. But if you simply make your needs known, you may be pleasantly surprised by the willingness of others to pitch in. Many times, friends and family members want to help, but don’t know how. Make it easier for them:

  • Set aside one-on-one time to talk to the person
  • Go over the list of caregiving needs you previously drew up
  • Point out areas in which they might be of service (maybe your brother is good at Internet research, or your friend is a financial whiz)
  • Ask the person if they’d like to help, and if so, in what way
  • Make sure the person understands what would be most helpful to both you and the caregiving recipient

Other places you can turn for caregiver support include:

  • Your church, temple, or other place of worship
  • Caregiver support groups at a local hospital or online
  • A therapist, social worker, or counselor
  • National caregiver organizations
  • Organizations specific to your family member’s illness or disability

Tip 3: Really Connect with Your Loved One

Pablo Casals, the world-renowned cellist, said, “The capacity to care is the thing that gives life its deepest significance and meaning.” When done in the right way, caring for a loved one can bring pleasure—to both you, the caregiver, and to the person you’re caring for. Being calm and relaxed and taking the time each day to really connect with the person you’re caring for can release hormones that boost your mood, reduce stress, and trigger biological changes that improve your physical health. And it has the same effect on your loved one, too.

Even if the person you’re caring for can no longer communicate verbally, it’s important to take a short time to focus fully on him or her. Avoid all distractions—such as the TV, cell phone, and computer—make eye contact (if that’s possible), hold the person’s hand or stroke their cheek, and talk in a calm, reassuring tone of voice. When you connect in this way, you’ll experience a process that lowers stress and supports physical and emotional well-being—for both of you—and you’ll experience the “deepest significance and meaning” that Casals talks about.

Tip 4: Attend to Your Own Needs

If you’re distracted, burned out, or otherwise overwhelmed by the daily grind of caregiving, you’ll likely find connecting to the person you’re caring for difficult. That’s why it’s vital that while you’re caring for your loved one, you don’t forget about your own needs. Caregivers need care, too.

Emotional needs of family caregivers
Take time to relax daily and learn how to regulate yourself and de-stress when you start to feel overwhelmed. As explained above, one way to do that is by really connecting with the person you’re caring for. If that isn’t possible, employ your senses to effectively relieve stress in the moment and return yourself to a balanced state.
Talk with someone to make sense of your situation and your feelings. There’s no better way of relieving stress than spending time face-to-face with someone who cares about you.
Keep a journal. Some people find it helpful to write down their thoughts and feelings to help them see things more clearly.
Feed your spirit. Pray, meditate, or do another activity that makes you feel part of something greater. Try to find meaning in both your life and in your role as a caregiver.
Watch out for signs of depression, anxiety, or burnout and get professional help if needed.
Social and recreational needs of family caregivers
Stay social. Make it a priority to visit regularly with other people. Nurture your close relationships. Don’t let yourself become isolated.
Do things you enjoy. Laughter and joy can help keep you going when you face trials, stress, and pain.
Maintain balance in your life. Don’t give up activities that are important to you, such as your work or your hobbies.
Give yourself a break. Take regular breaks from caregiving, and give yourself an extended break at least once a week.
Find a community. Join or reestablish your connection to a religious group, social club, or civic organization. The broader your support network, the better.
Physical needs of family caregivers
Exercise regularly. Try to get in at least 30 minutes of exercise, three times per week. Exercise is a great way to relieve stress and boost your energy. So get moving, even if you’re tired.
Eat right. Well-nourished bodies are better prepared to cope with stress and get through busy days. Keep your energy up and your mind clear by eating nutritious meals at regular times throughout the day.
Avoid alcohol and drugs. It can be tempting to turn to substances for escape when life feels overwhelming, but they can easily compromise the quality of your caregiving. Instead, try dealing with problems head on and with a clear mind.
Get enough sleep. Aim for an average of eight hours of solid, uninterrupted sleep every night. Otherwise, your energy level, productivity, and ability to handle stress will suffer.
Keep up with your own health care. Go to the doctor and dentist on schedule, and keep up with your own prescriptions or medical therapy. As a caregiver, you need to stay as strong and healthy as possible.

 

Tip 5: Take Advantage of Community Services

There are services to help caregivers in most communities. Depending on where you live, the cost may be based on ability to pay or covered by the care receiver’s insurance. Services that may be available in your community include adult day care centers, home health aides, home-delivered meals, respite care, transportation services, and skilled nursing.

Caregiver services in your community. Call your local senior center, county information and referral service, family services, or hospital social work unit for contact suggestions. Advocacy groups for the disorder your loved one’s suffering from may also be able to recommend local services. In the U.S., contact your local Area Agency on Aging for help with caring for older family members.

Caregiver support for veterans. If your care recipient is a veteran in the U.S., home health care coverage, financial support, nursing home care, and adult day care benefits may be available. Some Veterans Administration programs are free, while others require co-payments, depending upon the veteran’s status, income, and other criteria.

Your family member’s affiliations. Fraternal organizations such as the Elks, Eagles, or Moose lodges may offer some assistance if your loved one is a longtime dues-paying member. This help may take the form of phone check-ins, home visits, or transportation.

Community transportation services. Many communities offer free or low-cost transportation services for trips to and from medical appointments, day care, senior centers, and shopping malls.

Adult day care. If your senior loved one is well enough, consider the possibility of adult day care. An adult day care center can provide you with needed breaks during the day or week, and your loved one with some valuable diversions and activities.

Personal care services. Help with activities of daily living, such as dressing, bathing, feeding, or meal preparation may be provided by home care aides, hired companions, certified nurse’s aides, or home health aides. Home health aides might also provide limited assistance with things such as taking blood pressure or offering medication reminders.

Health care services. Some health care services can be provided at home by trained professionals such as physical or occupational therapists, social workers, or home health nurses. Check with your insurance or health service to see what kind of coverage is available. Hospice care can also be provided at home.

Meal programs. Your loved one may be eligible to have hot meals delivered at home by a Meals on Wheels program. Religious and other local organizations sometimes offer free lunches and companionship for the sick and elderly.

Tip 6: Provide Long-distance Care

Many people take on the role of designated caregiver for a family member—often an older relative or sibling—while living more than an hour’s travel away. Trying to manage a loved one’s care from a distance can add to feelings of guilt and anxiety and present many other obstacles. But there are steps you can take to prepare for caregiving emergencies and ease the burden of responsibility.

Set up an alarm system for your loved one. Because of the distance between you, you won’t be able to respond in time to a life-threatening emergency, so subscribe to an electronic alert system. Your loved one wears the small device and can use it to summon immediate help.

Manage doctor and medical appointments. Try to schedule all medical appointments together, at a time when you’ll be in the area. Make the time to get to know your loved one’s doctors and arrange to be kept up-to-date on all medical issues via the phone when you’re not in the area. Your relative may need to sign a privacy release to enable their doctors to do this.

Use a case manager. Some hospitals or insurance plans can assign case managers to coordinate your loved one’s care, monitor his or her progress, manage billing, and communicate with the family.

Investigate local services. When you’re not there, try to find local services that can offer home help services, deliver meals, or provide local transportation for your loved one. A geriatric care manager can offer a variety of services to long-distance caregivers, including providing and monitoring in-home help for your relative.

Schedule regular communication with your loved one. A daily email, text message, or quick phone call can let your relative know that they’re not forgotten and give you peace of mind.

Arrange telephone check-ins from a local religious group, senior center, or other public or nonprofit organization. These services offer prescheduled calls to homebound older adults to reduce their isolation and monitor their well-being.

Related articles

Caregiver Stress and Burnout: Tips for Regaining Your Energy, Optimism, and Hope

Tips for Alzheimer’s Caregivers: Preparing for the Road Ahead and Getting the Help You Need

Stress Management: Using Self-Help Techniques for Dealing with Stress

Resources and References

Caregiver support services in the U.S.

Caregiving Resource Center – Tools, work sheets and tips on how to plan, prepare and succeed as a caregiver. (AARP)

Find Help in Your Community – Connects families to community-based resources for senior care. (Eldercare Locator)

Searching for Caregiver Information – Covers a wide range of issues, from how to talk to an attorney to federal and state legislation related to caregiving. (Family Caregiver Alliance)

For Family Caregivers: Guides and Checklists – Helps family caregivers of chronically or seriously ill patients navigate home care and the health care system. (Next Step in Care)

Family Caregiver Toolbox – Tips and information to help caregivers care for their loved ones and themselves. (Caregiver Action Network)

Find Aging Resources in Your Area – Portal for options that allow people to choose home and community-based services and living arrangements that suit them best. (National Association of Area Agencies on Aging)

Healthfinder – Find health care and other services near you. (U.S. Department of Health and Human Services)

Caregiver support services in other countries

Your Guide to Care and Support – NHS services available to UK carers of disabled children and adults, including respite care. (NHS)

Find Care and Support – A guide to understanding how to get care and support for seniors in the UK. (Age UK)

Carers – For Australian residents, provides information and support services for older people, people with disabilities and those who provide care and services. (Australian Government)

My Aged Care – Information on contacts and services available to assist you with ageing and aged care issues in Australia, including home care services for seniors. (Australian Government Depart of Health and Ageing)

Carers New Zealand – Offers help and advice for New Zealand carers, including guidance on respite care services. (Carers NZ)

Resources for Seniors – Information on services for seniors in Canada, including in-home support. (Government of Canada)

Meals on Wheels in the U.S.

Meals on Wheels: Find a U.S. Program – A searchable database that allows you to find a Meals on Wheels program in your area of the U.S. (Meals on Wheels Association of America)

Meals on Wheels in other countries

Meals at Home Services (UK) – In the UK, find out if you qualify to receive meals delivered to your home and access a directory of providers in your area. (Directgov)

Meals on Wheels Australia – Find your local Meals on Wheels service in Australia. (Meals on Wheels Australia)

Find a Meals on Wheels Location in Canada – Find a Meals on Wheels and other senior meal programs in your area of Canada. (MealCall)

Long-distance caregiving

Caring From a Distance – An organization for long-distance caregivers in the U.S., providing service directories and helplines. (CFAD.org)

Citation

https://www.helpguide.org/articles/parenting-family/family-caregiving.htm

Authors: Melinda Smith, M.A. and Jeanne Segal, Ph.D. Last updated: October 2017.

©Helpguide.org

 

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