Stages of Dementia: How Does the Disease Change Over Time?

(MedicalNewsToday.com) Dementia is not a specific illness or disease. It involves a variety of symptoms associated with impaired thinking, memory, and communication.

To have a diagnosis of dementia, the decline in functioning must affect a person’s ability to perform everyday activities.

This article will look at several types of dementia, and how they change as the condition progresses.

Types of Dementia

Dementia may have different causes. Changes to the brain depend on the type of dementia a person has. Common types of dementia include Alzheimer’s disease, vascular dementia, dementia with Lewy bodies, and mixed dementia.

Alzheimer’s Disease

The most common cause of dementia is Alzheimer’s disease. According to the Alzheimer’s Association, between 60 and 80 percent of dementia is caused by Alzheimer’s.

It is not entirely clear what causes Alzheimer’s, but clumps of a protein called beta-amyloid are found in the brain of people with this type of dementia.

Vascular Dementia

Vascular dementia may occur when there is reduced circulation to the brain due to a stroke or other conditions, resulting in damage to the blood vessels in the brain.

Dementia with Lewy Bodies

Dementia with Lewy bodies happens when abnormal proteins develop in the brain, called Lewy bodies. The protein deposits may be found throughout the brain, including the cerebral cortex, the area involved in language and thinking.

Mixed Dementia

Mixed dementia involves more than one cause. Blood vessel problems may be present along with abnormal proteins in the brain, for example.

How Do Symptoms of Dementia Change Over Time?

Regardless of the cause, symptoms of dementia tend to worsen over time.

The rate of progression varies from person to person. Genetics, age, and overall health may play a role in how fast the disease progresses.

Early Symptoms

Dementia often, but not always, starts with a mild decline in the ability to think. For example, someone may forget a recent conversation or the name of a familiar object.

At this point, the decrease in memory may not greatly affect a person’s ability to function daily.

Early symptoms may also include a decreased ability to perform certain tasks, such as paying bills or following a recipe. Subtle changes in personality may also be noticed by people close to an individual with dementia.

At this stage, a person with dementia may start to realize something is not right, but they may choose to hide their symptoms.

Moderate Dementia Dymptoms

As dementia progresses, symptoms become harder to hide. More noticeable symptoms may develop. Help with self-care or everyday activities may be needed.

Personality changes may become more noticeable. The person may experience paranoia or fear. Symptoms may include increased confusion and memory loss.

People with moderate dementia commonly forget their address or other personal information, including their phone number. Sleep patterns and mood may change.

Late-stage or Severe Dementia Dymptoms

Gradually, dementia can progress and become severe. Memory is often significantly affected. Someone with dementia may not recognize family members.

During late-stage dementia, symptoms may include an inability to communicate, walk, and control bowel and bladder function.

A person with late-stage dementia may have muscle rigidity and abnormal reflexes. Full-time personal care is usually needed for eating, bathing, and dressing. People with severe dementia are vulnerable to infections, including pneumonia and bed sores.

How Do Treatment Options Change Over Time?

Currently, there is no cure for dementia, including Alzheimer’s disease, but there are treatments. Treatment usually aims to decrease symptoms and manage behavioral changes.

Treatment may also change over time. Different classifications of medication may be prescribed, based on the stage of the disease.

Medications may reduce symptoms by affecting chemicals that carry messages to the brain cells.

These drugs are called cholinesterase inhibitors. They are often prescribed for people with mild to moderate symptoms. Cholinesterase inhibitors treat symptoms associated with confusion, communication, and memory.

In people with moderate-to-severe dementia, treatment may also include memantine. Memantine is a drug that may help improve language, thinking, and memory.

Memantine works by regulating glutamate, a chemical in the brain that is involved in memory and learning. Memantine may delay the progression of symptoms temporarily for some people.

Treatment options may include medications that reduce behavioral changes, such as anxiety and sleep problems.

In later stages, different medications may be needed, as symptoms develop. Particular drugs may be recommended to treat specific symptoms, such as fear, restlessness, and hallucinations.

As dementia progresses, treatment may also focus on improving the quality of life. For example, occupational therapy may be useful to teach people with dementia how to use adaptive equipment or to improve fine motor skills.

Diagnosis and Outcome

No single test can determine if a person has dementia. Tests will focus on the ability to think and neurological evaluation.

Tests evaluate skills such as reasoning, language, and memory. Movement, balance, and visual perception are also examined.

A medical history and blood tests can help to rule out other causes of symptoms.

Imaging studies, such as a CT or PET scan, can determine if a specific protein is deposited in the brain, or if there is any interruption to the blood flow to the brain.

Dementia scales can help to decide if dementia is present, and how far it has progressed.

The Global Deterioration Scale may be used to determine the severity of overall dementia.

Ratings range from one to seven, where seven indicates the most severe stage. A combination of tests may be used to make an assessment.

The outlook for people with dementia varies. Age at diagnosis and response to treatment affect how the condition progresses.

People with Alzheimer’s dementia often live for about 10 years after diagnosis, according to the Mayo Clinic.

However, everyone is different. Some people with dementia survive 20 years or more after diagnosis.

Living with Dementia in the Later Stages

It may be helpful for a person with dementia to be involved in decisions about their care before they become unable to communicate their wishes.

Advanced care planning allows an individual with dementia to state what they want and do not want, such as living in a nursing home or being cared for at home.

Living with late-stage dementia can often be challenging for patients and caregivers. As symptoms progress, more care is required.

Strategies that may help someone with late-stage dementia include techniques to jog memory, such as visual clues or notes.

Assistive technology devices include communications aids, automatic shutoff devices, and computerized recall devices.

Caregivers should create an environment that is calm and safe. It is important to identify and correct safety concerns. This includes removing tripping hazards and making sure rooms are easy to get around.

Caregivers should also ensure that medication is taken correctly, and that nutritional needs are met. Late-stage dementia can also be a difficult time for caregivers. Having a strong support system and allowing time to recharge is essential.

Citation

http://www.medicalnewstoday.com/articles/314209.php

Written by MaryAnn de Pietro

Reviewed by Timothy J. Legg, PMHNP-BC, GNP-BC, CARN-AP, MCHES

References

© 2004-2017 MediLexicon International Ltd, Bexhill-on-Sea, UK. All rights reserved.

 

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

(HelpGuide.org) The demands of caregiving can be overwhelming, especially if you feel you have little control over the situation or you’re in over your head. If the stress of caregiving is left unchecked, it can take a toll on your health, relationships, and state of mind—eventually leading to burnout.

When you’re burned out, it’s tough to do anything, let alone look after someone else. That’s why taking care of yourself isn’t a luxury—it’s a necessity. Read on for tips on how to rein in the stress in your life and regain balance, joy, and hope.

What Do You Need to Know?

Caring for a loved one can be very rewarding, but it also involves many stressors. Caregiver stress can be particularly damaging, since it is typically a chronic, long-term challenge. You may face years or even decades of caregiving responsibilities. It can be particularly disheartening when there’s no hope that your family member will get better.

If you don’t get the physical and emotional support your need, the stress of caregiving leaves you vulnerable to a wide range of problems, including depression, anxiety, and burnout. And when you get to that point, both you and the person you’re caring for suffer. That’s why managing the stress levels in your life is just as important as making sure your family member gets to his doctor’s appointment or takes her medication on time.

Signs and Symptoms of Caregiver Stress and Burnout

Learning to recognize the signs of caregiver stress and burnout is the first step to dealing with the problem.

Common Signs and Symptoms of Caregiver Stress

  • Anxiety, depression, irritability
  • Feeling tired and run down
  • Difficulty sleeping
  • Overreacting to minor nuisances
  • New or worsening health problems
  • Trouble concentrating
  • Feeling increasingly resentful
  • Drinking, smoking, or eating more
  • Neglecting responsibilities
  • Cutting back on leisure activities

Common Signs and Symptoms of Caregiver Burnout

  • You have much less energy than you once had
  • It seems like you catch every cold or flu that’s going around
  • You’re constantly exhausted, even after sleeping or taking a break
  • You neglect your own needs, either because you’re too busy or you don’t care anymore
  • Your life revolves around caregiving, but it gives you little satisfaction
  • You have trouble relaxing, even when help is available
  • You’re increasingly impatient and irritable with the person you’re caring for
  • You feel helpless and hopeless

Once you burn out, caregiving is no longer a healthy option for either you or the person you’re caring for. So it’s important to watch for the warning signs of caregiver burnout and take action right away when you recognize the problem.

Don’t let caregiving take over your whole life. It’s easier to accept a difficult situation when there are other areas of your life that are rewarding. Invest in things that give you meaning and purpose—whether it’s your family, church, a favorite hobby, or your career. Read on for some additional tips to lighten the load:

Find Ways to Feel Empowered

Feeling powerless is the number one contributor to burnout and depression. And it’s an easy trap to fall into as a caregiver, especially if you feel stuck in a role you didn’t expect or helpless to change things for the better. But no matter the situation, you aren’t powerless. This is especially true when it comes to your state of mind. You can’t always get the extra time, money, or physical assistance you’d like, but you can always get more happiness and hope.

Embrace your caregiving choice. Acknowledge that, despite any resentments or burdens you feel, you have made a conscious choice to provide care. Focus on the positive reasons behind that choice. Perhaps you provide care to repay your parent for the care they gave you growing up. Or maybe it’s because or your values or the example you want to set for your children. These deep, meaningful motivations can help sustain you through difficult times.

Focus on the things you can control. You can’t wish your mother’s cancer away or force your brother to help out more. Rather than stressing out over things you can’t control, focus on the way you choose to react to problems.

Celebrate the small victories. If you start to feel discouraged, remind yourself that all your efforts matter. You don’t have to cure your loved one’s illness to make a difference. Don’t underestimate the importance of making your loved one feel more safe, comfortable, and loved!

Get the Appreciation You Need

Feeling appreciated can go a long way toward not only accepting a stressful situation, but enjoying life more. Studies show that caregivers who feel appreciated experience greater physical and emotional health. Caregiving actually makes them happier and healthier, despite its demands. But what can you do if the person you’re caring for is no longer able to feel or show their appreciation for your time and efforts?

Imagine how your loved one would respond if he or she was healthy. If he or she wasn’t preoccupied with illness or pain (or disabled by dementia), how would your loved one feel about the love and care you’re giving? Remind yourself that the person would express gratitude if he or she was able.

Applaud your own efforts. If you’re not getting external validation, find ways to acknowledge and reward yourself. Remind yourself of the good you’re doing. If you need something more concrete, try making a list of all the ways your caregiving is making a positive difference. Refer back to it when you start to feel low.

Talk to a supportive family member or friend. Positive reinforcement doesn’t have to come from the person you’re caring for. When you’re feeling unappreciated, turn to friends and family who will listen to you and acknowledge your efforts.

Ask for Help

Taking on all of the responsibilities of caregiving without regular breaks or assistance is a surefire recipe for burnout. Don’t try to do it all alone. Look into respite care. Or enlist friends and family who live near you to run errands, bring a hot meal, or “baby-sit” the care receiver so you can take a well-deserved break.

Tips for getting the caregiving help you need

Speak up. Don’t expect friends and family members to automatically know what you need or how you’re feeling. Be up front about what’s going on with you and the person you’re caring for. If you have concerns or thoughts about how to improve the situation, express them—even if you’re unsure how they’ll be received. Get a dialogue going.

Spread the responsibility. Try to get as many family members involved as possible. Even someone who lives far away can help. You may also want to divide up caregiving tasks. One person can take care of medical responsibilities, another with finances and bills, and another with groceries and errands, for example.

Set up a regular check-in. Ask a family member, friend, or volunteer from your church or senior center to call you on a set basis (every day, weekly, or how ever often you think you need it). This person can help you spread status updates and coordinate with other family members.

Say “yes” when someone offers assistance. Don’t be shy about accepting help. Let them feel good about supporting you. It’s smart to have a list ready of small tasks that others could easily take care of, such as picking up groceries or driving your loved one to an appointment.

Be willing to relinquish some control. Delegating is one thing. Trying to control every aspect of care is another. People will be less likely to help if you micromanage, give orders, or insist on doing things your way.

Give Yourself a Break

As a busy caregiver, leisure time may seem like an impossible luxury. But you owe it to yourself—as well as to the person you’re caring for—to carve it into your schedule. Give yourself permission to rest and to do things that you enjoy on a daily basis. You will be a better caregiver for it.

There’s a difference between being busy and being productive. If you’re not regularly taking time-off to de-stress and recharge your batteries, you’ll end up getting less done in the long run. After a break, you should feel more energetic and focused, so you’ll quickly make up for your relaxation time.

Maintain your personal relationships. Don’t let your friendships get lost in the shuffle of caregiving. These relationships will help sustain you and keep you positive. If it’s difficult to leave the house, invite friends over to visit with you over coffee, tea, or dinner.

Prioritize activities that bring you enjoyment. Make regular time for things that bring you happiness, whether it’s reading, working in the garden, tinkering in your workshop, knitting, playing with the dogs, or watching the game.

Find ways to pamper yourself. Small luxuries can go a long way in relieving stress and boosting your spirits. Light candles and take a long bath. Ask your hubby for a back rub. Get a manicure. Buy fresh flowers for the house. Or whatever makes you feel special.

Make yourself laugh. Laughter is an excellent antidote to stress—and a little goes a long way. Read a funny book, watch a comedy, or call a friend who makes you laugh. And whenever you can, try to find the humor in everyday situations.

Get out of the house. Seek out friends, family, and respite care providers to step in with caregiving so you can have some time away from the home.

Take Care of Your Health

Think of your body like a car. With the right fuel and proper maintenance, it will run reliably and well. Neglect its upkeep and it will start to give you trouble. Don’t add to the stress of your caregiving situation with avoidable health woes.

Keep on top of your doctor visits. It’s easy to forget about your own health when you’re busy with a loved one’s care. Don’t skip check-ups or medical appointments. You need to be healthy in order to take good care of your family member.

Exercise. When you’re stressed and tired, the last thing you feel like doing is exercising. But you’ll feel better afterwards. Exercise is a powerful stress reliever and mood enhancer. Aim for a minimum of 30 minutes on most days. When you exercise regularly, you’ll also find it boosts your energy level and helps you fight fatigue.

Meditate. A daily relaxation or meditation practice can help you relieve stress and boost feelings of joy and well-being. Try yoga, deep breathing, progressive muscle relaxation, or mindfulness meditation. Even a few minutes in the middle of an overwhelming day can help you feel more centered.

Eat well. Nourish your body with fresh fruit, vegetables, whole grains, beans, lean protein, and healthy fats such as nuts and olive oil. Unlike sugar and caffeine—which provide a quick pick-me-up and an even quicker crash—these foods will fuel you with steady energy.

Don’t skimp on sleep. Cutting back on time in bed is counterproductive—at least if your goal is to get more done. Most people need more sleep than they think they do (8 hours is the norm). When you get less, your mood, energy, productivity, and ability to handle stress will suffer.

Join a Support Group

A caregiver support group is a great way to share your troubles and find people who are going through the same experiences that you are living each day. If you can’t leave the house, many Internet groups are also available.

In most support groups, you’ll talk about your problems and listen to others talk; you’ll not only get help, but you’ll also be able to help others. Most important, you’ll find out that you’re not alone. You’ll feel better knowing that other people are in the same situation, and their knowledge can be invaluable, especially if they’re caring for someone with the same illness as you are.

Local vs. Online Support Groups for Caregivers
Local support groups: Online support groups:
People live near each other and meet in a given place each week or month. People are from all over the world and have similar interests or problems.
You get face-to-face contact and a chance to make new friends who live near you. You meet online, through email lists, websites, message boards, or social media.
The meetings get you out of the house, get you moving provide a social outlet, and reduce feelings of isolation. You can get support without leaving your house, which is good for people with limited mobility or transportation problems.
Meetings are at a set time. You will need to attend them regularly to get the full benefit of the group. You can access the group whenever it’s convenient for you or when you need help most.
Since the people in the support group are from your area, they’ll be more familiar with local resources and issues. If your problem is very unusual—a rare disease, for example—there may not be enough people for a local group, but there will always be enough people online.

 

To find a community support group, check the yellow pages, ask your doctor or hospital, or call a local organization that deals with the health problem you would like to address in a support group. To find an Internet support group, visit the website of an organization dedicated to the problem.

Related HelpGuide articles

Resources and References

Preventing family caregiver burnout

Preventing Caregiver Burnout – Part of a handbook and resource guide for caregivers in Florida. Examines the signs of caregiver burnout and how to handle it. Includes tips for caregivers who are themselves challenged by age or infirmity. (Area Agency on Aging of Pasco-Pinellas)

Taking Care of You: Self-Care for Family Caregivers – Learn about the effects of caregiving on your own well-being, and what you can do to care for yourself. (Family Caregiver Alliance)

How to Feel Empowered as a Caregiver – Tips from a caregiving specialist on how to avoid bitterness and burnout by waking up to options within your reach. (AARP Magazine)

Tips and support for family caregivers

Caregiver Toolbox – Explore helpful tips and resources for family caregivers. (Caregiver Action Network)

Caregiver Support – Find articles, tips, and resources for caregivers who need support. (AgingCare.com)

Find caregiver services and resources in the U.S.

Family Care Navigator  – A state-by-state resource intended to help you locate services for family caregivers and resources for older or disabled adults. (Family Caregiver Alliance)

Resources for Caregivers of Diverse Populations and Specific Age Groups – Find links to resources for caregivers of adults, children, individuals with disabilities and mental disorders, veterans, and more. (American Psychological Association)

Find caregiver services internationally

What Social Care Services are Available? – NHS services available to UK carers of disabled children and adults, including respite care. (NHS)

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

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

Programs and Services (PDF) – Information on services for seniors in Canada, including in-home support.  (Government of Canada)

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Citation

https://www.helpguide.org/articles/stress/caregiving-stress-and-burnout.htm

Authors: Melinda Smith, M.A. and Gina Kemp, M.A. Last updated: April 2017.

©Helpguide.org. All rights reserved.

 

Alzheimer’s Caregiving: Help with Home Care

(NIH.org) Most people with Alzheimer’s disease are cared for at home by family members. Within families, caregiving is provided most often by wives and husbands, followed by daughters.

As Alzheimer’s disease gets worse, the person will need more and more care. Because of this, you will need more help. It’s okay to seek help whenever you need it.

Building a local support system is a key way to get help. This system might include a caregiver support group, the local chapter of the Alzheimer’s Association, family, friends, and faith groups. To learn where to get help in your community, contact

Various professional services can help with everyday care in the home of someone with Alzheimer’s disease. Medicare, Medicaid, and other health insurance plans may help pay for these services. Contact Eldercare Locator to find the services you need in your area by calling 1-800-677-1116 or visiting www.eldercare.gov.

Home Health Care Services

Home health care agencies send a home health aide or nurse to your home to help you care for a person with Alzheimer’s. They may come for a few hours or stay for 24 hours and are paid by the hour.

 

Some home health aides are better trained and supervised than others. Ask your doctor or other health care professional about good home health care services in your area. Get as much information as possible about a service before you sign an agreement. Also, ask for and check references

Here are some questions to ask before signing a home health care agreement.

  • Is your service licensed and accredited?
  • How much do your services cost?
  • What is included and not included in your services?
  • How many days a week and hours a day will an aide come to my home?
  • How do you check the background and experience of your home health aides?
  • How do you train your home health aides?
  • What types of emergency care can you provide?
  • Who do I contact if there is a problem?

Meal Services

Meal services bring hot meals to the person’s home or your home. The delivery staff does not feed the person. The person with Alzheimer’s disease must qualify for the service based on local guidelines. Some groups do not charge for their services. Others may charge a small fee. For information, call Eldercare Locator at 1-800-677-1116 or go to www.eldercare.gov or Meals on Wheels at 703-548-5558.

Adult Day Care Services

Adult day care services provide a safe environment, activities, and staff who take care of the person with Alzheimer’s at their own facility. This provides a much-needed break for you. Many programs provide transportation between the person’s home and the facility.

Adult day care services generally charge by the hour. Most insurance plans do not cover these costs. To find adult day care services in your area, contact the National Adult Day Services Association at 1-877-745-1440.

Respite Services

Respite services provide short stays, from a few days to a few weeks, in a nursing home or other place for the person with Alzheimer’s disease. This care allows you to get a break or go on a vacation.

Respite services charge by the number of days or weeks that services are provided. Medicare or Medicaid may cover the cost of up to 5 days in a row of respite care in an inpatient facility. Most private insurance plans do not cover these costs. To find respite services in your community, visit the National Respite Locator Service at www.respitelocator.org.

Geriatric Care Managers

Geriatric care managers visit your home to assess your needs and suggest and arrange home-care services. They charge by the hour. Most insurance plans don’t cover these costs. To find a geriatric care manager, contact the National Association of Professional Geriatric Care Managers at 1-520-881-8008.

Mental Health Professionals and Social Workers

Mental health professionals and social workers help you deal with any stress you may be feeling. They help you understand feelings, such as anger, sadness, or feeling out of control. They can also help you make plans for unexpected or sudden events.

Mental health professionals charge by the hour. Medicare, Medicaid, and some private health insurance plans may cover some of these costs. Ask your health insurance plan which mental health counselors and services it covers. Then check with your doctor, local family service agencies, and community mental health agencies for referrals to counselors.

For more information, see Getting Help with Caregiving. You can order a print copy of this booklet by calling 1-800-222-2225 or visiting www.nia.nih.gov/health.

Citation

http://nihseniorhealth.gov/alzheimerscare/helpwithhomecare/01.html

National Institutes of Health

 

7 Myths About Alzheimer’s Disease

(WebMD.com) It’s one of the most feared brain diseases: Alzheimer’s. It robs people of their memory bit by bit, has no cure — and with an aging population, shows no sign of slowing down.

The media is riddled with stories about its causes, symptoms, and prevention. But some of those reports don’t tell the whole story.

Here are seven common misunderstandings about Alzheimer’s disease and the truths behind them.

1. Myth: Some memory loss is normal.

True, many of us find that our memory isn’t what it once was as we age. But it’s important to distinguish between a busy mind and true memory loss, says James E. Galvin, MD, MPH.

“It may take you longer to remember where you put something or a name, but you’re able to get back to it. That’s not memory loss, that’s aging,” says Galvin, a neurology and psychiatry professor at New York University’s Langone Medical Center.

When should you be concerned? When changes in thinking occur.

“If you’re forgetting important things like loved ones’ names or if [memory loss] impacts your ability to function or there are things you can no longer do because of memory problems, seek evaluation,” says John Ringman, MD, associate clinical professor of neurology at UCLA’s David Geffen School of Medicine.

2. Myth: Exercise, diet, and mental activities prevent Alzheimer’s disease.

Although many stories in the popular press have advanced the idea that a healthy lifestyle can help prevent Alzheimer’s, the scientific evidence is unclear.

Studies have, indeed, found that eating a healthy diet, engaging in aerobic exercise on a regular basis, staying socially active, and keeping your mind engaged with games and puzzles are linked to lower odds of getting Alzheimer’s. Studies also suggest that “these same lifestyle changes may reduce the progression of symptoms for people who already have Alzheimer’s disease,” Galvin says.

But “it’s not entirely clear that the effect applies in individual cases,” Galvin says. “I’ve known Twinkie-eating couch potatoes who don’t get it and vegan marathon runners who do.”

An even bigger issue here is causation vs. correlation. That is, healthy lifestyles and less likelihood of getting Alzheimer’s disease may be linked (that’s correlation), but it’s not clear that lifestyle is driving that link (that’s causation).

It could be that people with healthy lifestyle habits have other traits working to their advantage. In short, there’s no proof that lifestyle prevents Alzheimer’s disease.

Still, there is no downside to eating healthfully, staying physically and mentally active, and nurturing your relationships. Even if it isn’t proven to prevent Alzheimer’s disease, it’s certainly good for you and your quality of life.

“My approach to that is that it’s a good idea for your general health and there is some evidence that aerobic exercise helps cognition,” Ringman says.

3. Myth: Only old people get Alzheimer’s.

It is true that age is the biggest risk factor for Alzheimer’s disease: One out of eight people 65 and older have it.

But there is such a thing as early-onset Alzheimer’s disease, which starts before age 65. It’s rare, accounting for only 5% to 10% of all U.S. Alzheimer’s cases — about 200,000 people.

“People can get it in their 20s, although typical [for early onset] is in the 40s and 50s,” Ringman says.

Early-onset Alzheimer’s disease often has a strong genetic link.

4. Myth: Alzheimer’s is all about genetics.

There are gene mutations that are linked to Alzheimer’s. But there’s more to Alzheimer’s disease than having a rogue gene.

Take the APOE gene, for example. It has several variations, including one that is linked to greater risk of getting Alzheimer’s disease. But not everyone with that APOE variation gets Alzheimer’s, and not everyone with Alzheimer’s has that APOE variation. And that’s just one of several genes linked to Alzheimer’s risk.

So clearly, genetics isn’t everything.

Usually, Galvin says, there is a strong family history with people of every generation getting it at same age.

“But, generally [genetics] are not a very large risk factor,” he says.

Researchers are hunting for more genetic clues. Meanwhile, keep this in mind: There is not one Alzheimer’s gene that seals your fate, and the biggest risk factor for Alzheimer’s, by far, is aging.

5. Myth: Depression causes Alzheimer’s disease.

Depression can be an early sign of Alzheimer’s disease, but it’s not proven to cause Alzheimer’s disease.

Depression is common. It affects nearly 15 million Americans, including 6.5 million people aged 65 or older.

But not everyone who is depressed gets Alzheimer’s disease. The exact link between the two conditions isn’t clear.

The degree of the depression may matter. “The kind of depression that precedes Alzheimer’s disease is milder, whereas people with depression [without Alzheimer’s] tend to be more severely affected. A suicidal Alzheimer’s patient is extremely rare,” Ringman says.

6. Myth: Dementia is the same as Alzheimer’s disease.

Dementia is an umbrella term used to describe a loss of memory caused by changes in the brain. Alzheimer’s is the most common form of dementia, but it’s not the only one.

“Everyone with Alzheimer’s disease has dementia but not everyone with dementia has Alzheimer’s disease,” Galvin says.

There are more than 70 different causes of dementia, including strokes, Parkinson’s disease, Lewy body dementia, and Pick’s disease.

7. Myth: Dietary supplements protect the brain.

There is no good evidence showing that dietary supplements prevent Alzheimer’s.

“At least in the supplements and vitamins and minerals that have been vigorously tested, they have uniformly failed to show any benefit,” Galvin says.

The dietary supplements most tested include fish oil, ginkgo biloba, and high-dose vitamins. Other supplements have not been as thoroughly tested for brain-protecting power.

Always tell your doctor about any supplements you’re taking or any memory problems you’re having.

Citation

By

http://www.webmd.com/alzheimers/features/7-alzheimers-disease-myths

©2005-2017 WebMD, LLC. All rights reserved.

 

Relieving Stress & Anxiety: Resources for Alzheimer’s Caregivers

(NIA.org) Caregivers face a variety of challenges when a loved one develops Alzheimer’s disease or another dementia. This resource list offers a selection of articles, books, and other materials that may help caregivers cope with their own stress, anxiety, and emotions.

Some resources on this list are free; others must be purchased. To buy an item, please contact the publisher to confirm price and payment information. Many items are also available from traditional and online bookstores.

Care for the Caregiver: Managing Stress (PDF, 175K) (2013, 19 p.)

This booklet for family caregivers of people with Alzheimer’s disease outlines 10 warning signs of severe caregiver stress, including depression and sleep problems. It discusses the importance of a positive attitude and suggests strategies for managing and reducing stress, including meditating, doing something enjoyable every day, exercising, and maintaining a sense of humor. Tips for combatting negative thoughts are also given.

Published by BrightFocus Foundation. Phone: 1-800-437-2423. E-mail: info@brightfocus.org. Free online access.

Caregivers (2009 video, 49 minutes)

“Caregivers” is one of four parts of “The Alzheimer’s Project,” a multimedia public health series co-presented by HBO Documentary Films and the National Institute on Aging in association with the Alzheimer’s Association, Fidelity Charitable Gift Fund, and the Geoffrey Beene Gives Back Alzheimer’s Initiative. “Caregivers” highlights the daily sacrifices and successes of primary caregivers of loved ones descending into debilitating stages of dementia.

Produced by HBO Documentary Films. Free online access.

Caregiving and Ambiguous Loss (2013, 2 p.)

Many caregivers of people with dementia experience “ambiguous loss,” a feeling that comes from caring for a person who is physically present but mentally and psychologically absent. This feeling can lead to depression, anxiety, and other health problems. This fact sheet offers tips for coping with the ambiguity of caring for a person with memory loss.

Available from the Family Caregiver Alliance. Phone: 1-800-445-8106. E-mail: info@caregiver.org. Free online access.

Caregiving Resource Center (2014)

This website from AARP offers information, tools, and tips for caregivers, including advice on stress management and caregiver support.

Published by AARP. Phone: 1-888-687-2277. E-mail: member@aarp.org. Free online access.

Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging (2013, 104 p.)

This free guide helps caregivers understand and cope with the many challenges of caregiving. Among other topics, it offers tips for caregivers to address their physical, emotional, and spiritual needs. It lists specific ways to ask for help.

Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. E-mail: adear@nia.nih.gov. Free online access.

Caring for Yourself (PDF, 672K)(2012, 2 p.)

This online tip sheet suggests ways for caregivers to take care of themselves and where to ask for help. It briefly discusses the importance of asking for help, offers ways to bolster one’s own feelings, and provides tips to meet spiritual needs.

Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. E-mail: adear@nia.nih.gov. Free online access.

Dementia Caregivers Share Their Stories: A Support Group in a Book (2005, 288 p.)

This book by Lynda A. Markut and Anatole Crane presents family caregivers’ stories about caregiving challenges. The caregivers, all members of an Alzheimer’s/dementia support group, were interviewed about their experiences, feelings, and ways they coped with their caregiving role. Topics include early symptoms and diagnosis, behavior changes, emotions, and coping with losses.

Published by Vanderbilt University Press. Phone: 1-800-627-7377. E-mail: vupress@vanderbilt.edu. Hardcover $69.95, softcover $24.95, e-book $23.99.

Dementia, Caregiving and Controlling Frustration (2003)

This fact sheet offers detailed suggestions for recognizing signs of frustration that can arise when trying to change an uncontrollable situation. Caregivers can learn to recognize what is and is not within their control and to respond appropriately. Strategies to cope with frustration, such as leaving the room briefly and counting to 10 slowly, and to adapt one’s thinking are given.

Available from the Family Caregiver Alliance. Phone: 1-800-445-8106. E-mail: info@caregiver.org. Free online access.

Depression and Caregiving (2003, 4 p.)

Many caregivers of people with dementia suffer from depression. This tip sheet describes how to spot the symptoms of depression and what to do if you think you might be depressed. Medication, psychotherapy, and other treatments are described. Available in English, Spanish, and Chinese, as well as Korean and Vietnamese.

Available from the Family Caregiver Alliance. Phone: 1-800-445-8106. E-mail: info@caregiver.org. Free online access.

Hit Pause: Helping Dementia Families Deal with Anger (PDF, 2.1M) (2006, 12 p.)

This booklet guides professionals to help caregivers who are angry with the care recipient, other family members, or professionals they feel are unresponsive or insensitive. The booklet presents typical scenarios and suggested responses for professionals to help caregivers maintain self-control and deal more effectively with difficult circumstances. Tips to help caregivers deal with sadness and guilt are also offered.

Available from the Duke Family Support Program. Phone: 1-800-672-4213 or 1-919-660-7510. E-mail: lisa.gwyther@duke.edu. $2.

Lessons Learned: Shared Experiences in Coping (PDF, 151K) (1999).

This booklet by Edna Ballard and Cornelia Poer documents the experiences of a support group of people caring for loved ones with Alzheimer’s disease. Filled with short stories and advice, it covers topics such as getting a diagnosis, finding support services, and making decisions about treatment, care, and living arrangements. The positive and negative aspects of caregiving are discussed.

Available from the Duke Family Support Program. Phone: 1-800-672-4213 or 1-919-660-7510. E-mail: lisa.gwyther@duke.edu. $10.

Living with Grief: Alzheimer’s Disease (2004, 290 p.)

This book explains how hospice principles can improve care for people with Alzheimer’s disease and their families. Along with background information and personal accounts about Alzheimer’s, the book presents information to help caregivers cope with loss both before and after the death of a loved one with the disease. The challenges of providing hospice care for people with dementia are also addressed.

Published by Hospice Foundation of America. Phone: 1-800-854-3402 or 1-202-457-5811. E-mail: haoffice@hospicefoundation.org. $12.48.

Minding Our Elders: Caregivers Share Their Personal Stories (2005, 136 p.)

This book is a “portable support group” that shares caregivers’ stories as a way to offer comfort and to assure other caregivers that they are not alone. Six stories are from author Carol Bradley Bursack’s experience as a caregiver for a neighbor and six family members. The others are from caregivers across the United States. The author’s Minding Our Elders website has more resources and information.

Published by McCleery and Sons Publishing. Available from online booksellers. Paperback $12.53.

Mom’s OK, She Just Forgets: The Alzheimer’s Journey from Denial to Acceptance (2006, 182 p.)

This book by Evelyn McLay and Ellen Young focuses on denial in families caring for a loved one with dementia. Denial may seem to be an acceptable coping mechanism when faced with an incurable disease, but the failure to accept reality can make things worse for the person with dementia and his or her family. The authors suggest behaviors, tools, and techniques for moving beyond denial to loving action and an improved attitude.

Published by Prometheus Books. Phone: 1-800-421-0351. Paperback $17.98.

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir (2007, 208 p.)

This book by Carol O’Dell tells the story of a daughter coping with role reversal when her sick, aging mother moves in. As she struggles to balance the ever-increasing demands of her mother with those of her three children and husband, the author must find time for her own needs. This is not a how-to book on caregiving, but an honest exploration of the impact of caregiving on relationships, beliefs, and lives.

Available from online booksellers. Phone: 1-904-403-2186. E-mail: carolodell@gmail.com.

National Respite Locator

Respite care helps caregivers get a break, hold a job, and handle stress. This national searchable database helps caregivers find respite of all types—in the home, in a facility, or at a day care center. The service also has a free guide, The ABCs of Respite: A Consumer Guide for Family Caregivers. Technical assistance for respite providers is offered as well.

Available from of the ARCH National Respite Nework and Resource Center. Phone: 1-919-490-5577. E-mail: mmathers@chtop.org. Free online access.

Pressure Points: Alzheimer’s and Anger (PDF, 151K) (2000, 70 p.)

This book discusses the stress and anger that are common among caregivers of people with Alzheimer’s disease. Topics include defining anger, identifying risk factors for anger in caregivers, maintaining control, helping children deal with anger, coping when the person with Alzheimer’s is angry, and dealing with abuse in a home or care facility.

Available from the Duke Family Support Program. Phone: 1-800-672-4213 or 1-919-660-7510. E-mail: lisa.gwyther@duke.edu. $10.

iCare Family (website)

This website offers online information and stress management training for family caregivers of people with Alzheimer’s disease or another dementia. The NIA-funded project includes online training videos and articles that cover dealing with stress, how to relax, managing difficult behaviors, communication skills, and other topics. Developed in collaboration with Stanford University and the Alzheimer’s Association.

Produced by Photozig Inc. Phone: 1-650-694-7496. E-mail: icare@photozig.com. Free online access.

Strength in Caring: Giving Power Back to the Alzheimer’s Caregiver (2005)

This book by Mark Matloff is designed to help families and caregivers of people with Alzheimer’s strengthen themselves emotionally to cope with the demands they must face. It addresses a range of topics, including legal aspects of Alzheimer’s, medical facts, coping with grief, managing stress, and building happiness.

Available from online booksellers. Paperback $18.

Surviving the Waves of Dementia Care Grief (PDF, 2.0M) (2011, 3 p.)

This article in the summer-fall 2011 issue of Care ADvantage magazine (p. 17-19) describes how grief unfolds for caregivers of people with Alzheimer’s, from the time of diagnosis until the time of death. It discusses how grief can come and go and can change in intensity. Ways to cope, such as keeping a journal and maintaining an exercise routine, are offered.

Published by the Alzheimer’s Foundation of America. Phone: 1-866-232-8484. Free online access.

Take Care of Yourself: 10 Ways to be a Healthier Caregiver (PDF, 866K) (2012, 6 p.)

Caregivers may be so overwhelmed that they neglect their own physical, mental, and emotional well-being. This online booklet lists the signs of caregiver stress and get suggestions for managing stress and taking positive action.

Published by the Alzheimer’s Association. Phone: 1-800-272-3900. E-mail: info@alz.org. Free online access.

Taking Care of YOU: Self-Care for Family Caregivers (2012, 4 p.)

This tip sheet can help caregivers think carefully about sources of stress, barriers to reducing stress, and ways to relieve stress. It offers concrete suggestions for developing achievable goals and solutions, such as exercising or talking to a doctor.

Available from the Family Caregiver Alliance. Phone: 1-800-445-8106. E-mail: info@caregiver.org. Free online access.

Wait a Minute! When Anger Gets Too Much (PDF, 151K) (2003, 6 p.)

This pamphlet aims to help caregivers and family members of people with dementia deal with anger and frustration. It includes short scenarios and advice from social workers for dealing with anger at the person with dementia, family members, other care providers, and overwhelming circumstances.

Available from the Duke Family Support Program. Phone: 1-800-672-4213 or 1-919-660-7510. E-mail: lisa.gwyther@duke.edu. $2.

When a Family Member Has Dementia: Steps to Becoming a Resilient Caregiver (2006, 184 p.)

This book by clinical psychologist Susan McCurry offers advice to help caregivers become more resilient as they deal with the challenges of caring for a loved one with dementia. Information is based on the author’s program called “The Dementia Dance” or DANCE, an acronym for five core principles: D: Don’t Argue, A: Accept the Disease, N: Nurture Yourself, C: Create Novel Solutions, and E: Enjoy the Moment. Vignettes from the author’s practice illustrate these principles.

Published by Praeger. Phone: 1-800-368-6868. E-mail: customerservice@abc-clio.com. $39.95; call for e-book price.

Citation

https://www.nia.nih.gov/alzheimers/relieving-stress-anxiety-resources-alzheimers-caregivers

National Institute on Aging

 

Alzheimer’s and Sleep Problems

(WebMD.com) People with Alzheimer’s disease go through many changes, and sleep problems are often some of the most noticeable.

Most adults have changes in their sleep patterns as they age. But the problems are more severe and happen more often for people with Alzheimer’s.

You might notice that your loved one:

  • Sleeps a lot more than usual, including taking naps during the day. This is common for people in the early stages of the disease.
  • Has trouble falling asleep or wakes up a lot at night. When he does sleep, he might doze on and off.
  • Wants to sleep more during the day and stay awake at night. This becomes more common as Alzheimer’s gets worse.
  • Gets restless or agitated when the sun sets, a condition called sundowning. He might pace or wander during the night, too.

Scientists aren’t sure why people with Alzheimer’s tend to have problems sleeping. It may be because the disease damages the brain and changes the way it controls the sense of when to get shut-eye and when to be awake.

But even when sleep patterns change, you can make it easier for your loved one to rest and get some Zzz’s yourself.

Treatment

Most doctors say it’s best to start with changes to lifestyle and behavior to fix sleep problems. There are medications that can aid sleep, but they can be harmful for people with Alzheimer’s, causing confusion and making them more likely to fall.

Here are some tips to get started:

  • Help your loved one keep a regular 24-hour schedule. Eat meals, wake up, and go to bed at the same time each day.
  • Discourage naps during the day, or at least limit them to 30 minutes.
  • Move him into sunlight soon after he wakes up and keep the lighting low as bedtime approaches. This helps set his internal clock closer to normal.
  • Make sure he exercises every day, although not within 4 hours of going to bed.
  • Encourage him to avoid nicotine, alcohol, caffeine, and large meals, especially at night.
  • Make sure his bedroom is comfortable, with the temperature not too warm and not too cold.
  • Check with your loved one’s doctor about other health conditions he might have that can cause sleep problems, such as restless leg syndrome, sleep apnea, or urinary tract infections. There may be treatments that can help.
  • Some Alzheimer’s drugs, like donepezil (Aricept), can cause trouble sleeping. If your loved one takes this medication, avoid giving it to him at night.

A mix of changes may help if one tactic doesn’t work.

Sleep Medications and Alzheimer’s

If your loved one’s doctor prescribes medicine to help him rest, he’ll probably start at the lowest dose possible and stop the drugs as soon as sleep patterns improve.

Medications include:

  • Sleeping pills such as zaleplon (Sonata) and zolpidem (Ambien)

Doctors also sometimes prescribe drugs called antipsychotics such as risperidone (Risperdal). They can be helpful, but they also might increase the risk of death in some people with dementia. You’ll want to talk carefully with your loved one’s doctor about this medicine before he takes it.

Just as Alzheimer’s sleep problems can change over the years, so do the ways you can handle it. Always talk to your doctor about which options are best.

How You Can Get Rest, Too

As a caregiver, it’s just as important for you to get enough shut-eye, so you can take better care of yourself and your loved one.

Many of the same things recommended for people with Alzheimer’s can work for you, too:

  • Keep a regular schedule.
  • Don’t smoke, and cut down on caffeine, alcohol, and large meals, especially at night.
  • Have a comfortable bedroom and use it only for sleeping.
  • If your loved one takes a short nap during the day, take the chance to lie down and rest as well.
  • Connect with other caregivers for support. You might feel better talking to others about your situation and hearing their advice.
  • Aim to get 7-9 hours of sleep a night.
  • Try to relax before you go to bed. Muscle relaxation exercises, writing in a journal, or soft music can help.
Citation

http://www.webmd.com/alzheimers/guide/alzheimers-sleep-problems#1

WebMD Medical Reference Reviewed by Richard Senelick, MD on June 22, 2015

© 2005 – 2017 WebMD, LLC. All rights reserved.

 

How To Help Alzheimer’s Patients Enjoy Life, Not Just ‘Fade Away’

(Kaiser Health News) Alzheimer’s disease has an unusual distinction: It’s the illness that Americans fear most — more than cancer, stroke or heart disease.

The rhetoric surrounding Alzheimer’s reflects this. People “fade away” and are tragically “robbed of their identities” as this incurable condition progresses, we’re told time and again.

Yet, a sizable body of research suggests this Alzheimer’s narrative is mistaken. It finds that people with Alzheimer’s and other types of dementia retain a sense of self and have a positive quality of life, overall, until the illness’s final stages.

They appreciate relationships. They’re energized by meaningful activities and value opportunities to express themselves. And they enjoy feeling at home in their surroundings.

“Do our abilities change? Yes. But inside we’re the same people,” said John Sandblom, 57, of Ankeny, Iowa, who was diagnosed with Alzheimer’s seven years ago.

Dr. Peter Rabins, a psychiatrist and co-author of “The 36-Hour Day,” a guide for Alzheimer patients’ families, summarized research findings this way:

“Overall, about one-quarter of people with dementia report a negative quality of life, although that number is higher in people with severe disease.”

“I’ve learned something from this,” admitted Rabins, a professor at the University of Maryland. “I’m among the people who would have thought, ‘If anything happens to my memory, my ability to think, I can’t imagine anything worse.’

“But I’ve seen that you can be a wonderful grandparent and not remember the name of the grandchild you adore. You can be with people you love and enjoy them, even if you’re not following the whole conversation.”

The implication: Promoting well-being is both possible and desirable in people with dementia, even as people struggle with memory loss, slower cognitive processing, distractibility and other symptoms.

“There are many things that caregivers, families and friends can do — right now — to improve people’s lives,” said Dr. Allen Power, author of “Dementia Beyond Disease: Enhancing Well-Being” and chair for aging and dementia innovation at the Schlegel-University of Waterloo Research Institute for Aging in Canada.

Of course, the final stages of Alzheimer’s disease and other types of dementia are enormously difficult, and resources to help caregivers are scarce — problems that shouldn’t be underestimated.

Still, up to 80 percent of people with dementia are in the mild and moderate stages. Here are some elements of their quality of life that should be attended to:

Focus On Health

One notable study analyzed lengthy discussions between people with dementia, caregivers and professionals at six meetings of Alzheimer’s Disease International, an association of Alzheimer’s societies across the world.

Those discussions emphasized the importance of physical health: being free from pain, well-fed, physically active and well-groomed, having continence needs met, being equipped with glasses and hearing aids and not being overmedicated. Cognitive health was also a priority. People wanted “cognitive rehabilitation” to help them learn practical techniques for promoting memory or compensating for memory loss.

Up to 40 percent of people with Alzheimer’s disease suffer from significant depression, and research by Rabins and colleagues underscores the importance of evaluating and offering treatment to someone who appears sad, apathetic and altogether disinterested in life.

Foster Social Connections

Being connected with and involved with other people is a high priority for people with dementia. Based on research conducted over several decades, Rabins listed social interaction as one of the five essential elements of a positive quality of life.

But fear, discomfort and misunderstanding routinely disrupt relationships once a diagnosis is revealed.

“The saddest thing that I hear, almost without exception, from people all over the world is that family, friends and acquaintances desert them,” said Sandblom, who runs a weekly online support group for Dementia Alliance International, an organization for people with dementia that he co-founded in January 2014.

Adapt Communication

Not knowing how to communicate with someone with dementia is a common problem.

Laura Gitlin, a dementia researcher and director of The Center for Innovative Care in Aging at Johns Hopkins School of Nursing, offered these suggestions in an article in the International Encyclopedia of Rehabilitation: Speak slowly, simply and calmly, make one or two points at a time, allow someone sufficient time to respond, avoid the use of negative words, don’t argue, eliminate noise and distraction, make eye contact but don’t stare, and express affection by smiling, holding hands or giving a hug.

Also, understand that people with dementia perceive things differently.

“You have to understand that when you have dementia you lose a lot of your natural perceptions of what others are doing,” Sandblom said. “So, a lot of us get a little nervous or suspicious. I think that’s a natural human reaction to knowing that you’re not picking up on things very well.”

Address Unmet Needs

Needs that aren’t recognized or addressed can cause significant distress and a lower quality of life. Rather than treat the distress, Power suggested, try to understand the underlying cause and do something about it.

Which needs are commonly unmet? In a study published in 2013, Rabins and colleagues identified several: managing patients’ risk of falling (unmet almost 75 percent of the time); addressing health and medical concerns (unmet, 63 percent); engaging people in meaningful activities (53 percent); and evaluating homes so that they’re safe and made easier to navigate (45 percent).

Respect Autonomy And Individuality

Rabins called this “awareness of self” and listed it among the essential components of a positive quality of life. Sandblom called this

“being seen as a whole person, not as my disease.”

At the Alzheimer’s Disease International meetings, people spoke of being listened to, valued and given choices that allowed them to express themselves. They said they wanted to be respected and have their spirituality recognized, not patronized, demeaned or infantilized.

In a review of 11 studies that asked people with dementia what was important to them, they said they wanted to experience autonomy and independence, feel accepted and understood, and not be overly identified with their illness.

None of this is easy. But strategies for understanding what people with dementia experience and addressing their needs can be taught. This should become a priority, Rabins said, adding that

“improved quality of life should be a primary outcome of all dementia treatments.”

Citation

http://khn.org/news/ how-to-help-alzheimers-patients-enjoy-life-not-just-fade-away/

By Judith Graham

© 2017 Kaiser Family Foundation. All rights reserved.

 

Taboo to Caregivers: 11 Things You Should Never Say

(AARP.org) I’ve had so much support from friends and family through 35 years of family caregiving. But every now and then people say things that really frustrate and annoy me. So I reached out to other family caregivers and asked if there were things they also wish people would never say to them. People surely don’t intend to be offensive: They just might not understand caregivers’ perspectives or haven’t thought carefully about what they’re saying.

If you know someone who is a family caregiver, please try to avoid saying these things that are truly not helpful and may be hurtful.

1. “You should…” This comment just makes us feel judged and defensive. When it comes from people who aren’t intimately involved in our caregiving journeys and often have no idea of the actual needs of our loved ones, it makes us feel resentful. It’s particularly frustrating when people assume we don’t know something obvious, or haven’t already tried what they’re suggesting.

Instead: Consider saying, “You’re doing a tremendous job! If you have challenges that you’re trying to solve I’d be happy to help you brainstorm and research new approaches if that would be helpful. I don’t want to suggest things you’ve already been doing or have ruled out.”

2. “Caregiving would be handled differently in my family…” Really? How do you know that? Is your situation exactly the same as mine? That’s simply not possible. We all play different roles in our families, have different strengths, relationships, illnesses, abilities and financial situations. Unless or until you are in the same situation as my family you cannot really know how you would handle it. This is especially frustrating when it comes from people who have never even met our loved ones.

Instead: Be aware that every family and situation is unique. Try saying, “I’m sure managing family caregiving is difficult and would be a challenge in any family.”

3. “It’s too hard for me to see how he’s changed due to his illness. I just can’t handle seeing him like that.” This is a very selfish viewpoint caregivers may hear from other family members or their loved one’s friends, particularly when dealing with dementia. If you think it’s hard for you, imagine how hard it is for him. Don’t you think it’s hard for me, too? That doesn’t mean I stay away!

Instead: You can acknowledge that it’s difficult, but come on — try to focus on the person who is ill. Grow, learn new skills and help care for the person or figure out how you might enhance his quality of life. It can be very rewarding.

4. “You look really tired; you really need to take care of yourself.” Tell me something I don’t know! I am aware that I’m tired, have gained weight, have health issues and more; I don’t need you to tell me this.

Instead: Help me take care of myself in practical ways. Offer to cook some healthy meals. Take a night shift so I can sleep. Gift me some exercise classes or a personal trainer who will come to the house. Care for my loved one for a few hours so I can rest.

5. “I just couldn’t do what you’re doing (or I can’t help care for her) because my life is too busy with other responsibilities,” or “You’ve put your life on hold to be a caregiver.” This suggests that in fact my life is not busy and I have all the time in the world to be caregiving, or that I can stop the clock to put life on hold — which is never the case. It also implies that your responsibilities, work, relationships, self-care and activities are more important than mine (not to mention more important than caring for our loved one). I need to keep living my life, too.

Instead: “I see that you are rearranging your life and juggling so much to be involved in caregiving. I realize that if I were the caregiver, I would have to rearrange my priorities, too,” or “I know you are making a lot of changes in your life to care for our mom. I’m going to look at my priorities also and step up to the plate to help care for her, too.”

6. “There’s always one person in the family who does the caregiving — you’re just that person.” Just because all too often one family member ends up taking on the bulk of caregiving responsibilities, it doesn’t mean it’s right.

Instead: “I think it’s unfair that you are providing the majority of the care for Dad. That must be frustrating. I’d be willing to help you try to find services to supplement the care you provide (and help pay for them if necessary),” or “I feel badly that you are providing more of Mom’s care. Let’s set up a schedule and come up with ways that I can take on more care responsibilities.”

7. “You are a saint,” or “Your reward for caregiving will be in heaven.” How about now? Our ultimate reward is precious time spent with our loved ones, knowing we are doing our best for them and being appreciated for what we are doing. Believe me, we are all far from perfect. We often feel inadequate, angry and exhausted. Sometimes when you say things like this it makes us feel that we shouldn’t expect support or appreciation now, while we are in the midst of it, or suggests we are superhuman and don’t need support.

Instead: “Thank you for what you are doing — it must be very challenging at times, but you keep forging ahead, and I admire you for that. I’d like to do (X, Y, Z) to support you.” Or surprise a caregiver with a supportive greeting card, gift certificate, present or anything that makes her feel appreciated.

8. “Just let me know if you need anything,” or “Let me know how I can help.” It’s always nice to offer help, but we are often so overwhelmed and exhausted that it’s hard for us to think of things for you to do or guess what you’d actually be willing or have the time to do. And we often don’t have the energy to reach out when we need support the most.

Instead: It’s so much more helpful — and seems much more sincere — when people offer specific things they can do. Try “Would it be helpful if I did (X, Y, Z)?” or “I’d be happy to come stay with her for a while so you can have a break: How about next Saturday, or is there a better time?” or “Let’s talk about some specific things I could do that might be helpful. Could I run some errands for you? Sort your mail? Water your plants? Come and visit with your loved one? Bring a meal?”

9. “If it’s hard for you, then why don’t you just put your mom in a nursing home (or other facility)?” Many people have no idea what that means financially or how complicated it is to advocate for and care for someone who is in a facility. They assume that a facility takes care of every need. Not true. While it’s a good choice for some people, it’s not always feasible or desirable for everyone.

Instead: “I can see how hard this is for you, and I so appreciate and admire what you are doing. I’d like to help…” (see above).

10. “Isn’t caring for your aging parents just like raising children?” Please never make that comparison! My parents will never be my children and I will never treat them that way. Caring for an adult is very different from caring for children in every way — physically and emotionally — both for them and for us. When caring for an aging parent we may feel like we are losing them little by little; it’s a long grieving process. Children are growing up and moving toward independence, while we struggle to support our parents so they can remain as independent as possible.

Instead: “I appreciate the way you respect and support your parents as they age, and can understand the challenges of seeing them change over time.”

11. “Well, at least your mom’s had a long life.” I understand that it’s a whole different thing to lose a loved one at a very young age — a horrible loss that I’ve experienced myself, with the death of my 19-year-old niece. But that doesn’t mean that an older person’s life is not valuable and their condition or death is not a huge loss. My grandfather lived to be 98 years old, and I was still heartbroken when he died.

Instead: “It’s always painful to watch someone you love suffer or change, or to lose them — at any age. I can imagine how hard this is for you.”

Above all, remember that most family caregivers are emotionally invested in this journey. It’s full of ups and downs and, yes, we may be sensitive. You may not be able to see the whole picture, so choose your words carefully and intentionally. We so need and value your support, reinforcement and appreciation — and above all your practical help. You’d be surprised what a positive influence you can have on our lives with a few well-chosen words.

Citation

http://www.aarp.org/home-family/caregiving/info-2017/things-never-say-to-a-caregiver-ag.html

Amy Goyer is AARP’s family and caregiving expert and author of AARP’s Juggling Life, Work and Caregiving.

Copyright 2017 AARP