Alzheimer’s Disease and Planning for Care

(UCSF Memory and Aging Center) The first step in planning care is getting an accurate diagnosis.

Diagnosis

Seek out a dementia clinic at a university hospital or ask your doctor to refer you to a neurologist with expertise in dementia and neurodegenerative disease.

Educate Yourself

Learn what you can about dementia and neurodegenerative disease. Understanding what is happening to your loved one will help you cope better with the changes and behavioral symptoms of the illness and help you to communicate with the medical team providing care. Accepting that the behavioral symptoms are part of the disease process will help you direct your energy toward workable solutions. When looking online, read well-known medical sites like the National Institutes of Health.

Join a Support Group

Talking with other caregivers who have gone or are going through a similar experience to yours can provide emotional support and practical advice. Contacts and support groups can be found through online communities or local organizations.

Assess the Situation

An objective analysis of your health, medical coverage, emotional state and other commitments will help you figure out how much you can and cannot do yourself, and what type of outside support will be needed to ensure your loved one’s health and safety.

Write down your assessment of:

  • Your loved one’s ability to function independently, both cognitively and emotionally.
  • The safety and adaptability of your home or physical environment.
  • Your own health and emotional resources.
  • Your other responsibilities at work, at home, to other family members and in the community.
  • The availability of family and friends to give you support and to share the care.
  • Your financial resources, including insurance coverage and, if the person had been working, private disability insurance and the federal program, Social Security Disability Insurance (SSDI).
  • Late stage preparation for you and your family member.
  • End-of-life preparation for you and your loved one.

A written document helps to avoid neglecting important issues. Review and update these observations periodically to help you determine if you need to make changes along the way.

Keep Good Records

Keep up-to-date records of emergency numbers, doctors, daily medications, special diets, back-up people with contact information, behavioral triggers and other pertinent information relating to your loved one’s care. Consider making copies of this record for the medical team and another trusted caregiver in case the information is needed in an emergency and you are unavailable.

Develop a Care Team

Keep a list of people you can contact for help, emotional support or respite. Use these pages to explain to others that the seemingly bizarre behaviors you cope with are part of the brain disease. Your list may be short, but don’t preclude people that can help by doing even small chores for you (grocery shopping, babysitting, dog walking, etc.). The critical thing is to be willing to accept help from others and tell them what you need.

Establish a Routine

A straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.

Hold a Family Conference

A formal meeting offers family members the chance to discuss the diagnosis and its likely progression, share caregiving responsibilities, and reduce misunderstandings and fears. It can help to have a member of the clergy, a professional care coordinator or a trusted friend serve as an impartial moderator. Let everyone know they can play a role, even if they are a thousand miles away, and help you, the primary family caregiver, from bearing the brunt of all the work all of the time.

Prepare for the End

Planning for the difficult decisions can make it much easier for the person with dementia and their family and caregivers to manage their healthcare, financial and legal affairs. Start early, so that you can be part of the process and share your wishes with the people who may need to make decisions on your behalf. It is vital that you think through what to do if you should be incapacitated.

Caregiving Resources

  • Printable list of online resources
  • Administration on Aging (AoA): The mission of AoA is to develop a comprehensive, coordinated and cost-effective system of home and community-based services that helps elderly individuals maintain their health and independence in their homes and communities.
  • Aging in the Know: A health care site created by the American Geriatrics Society Foundation for Health in Aging (FHA).
  • AGS Updated Beers Criteria for Potentially Inappropriate Medication Use in Older Adults (2012): A medication guidelines and recommendations site created by the American Geriatrics Society Foundation.
  • alzheimers.gov is the government’s free information resource about Alzheimer’s disease and related dementias.
  • Alzheimer’s Association: The Alzheimer’s Association works on a global, national and local level to enhance care and support for all those affected by Alzheimer’s and related dementias.
  • Alzheimer’s Disease Education and Referral (ADEAR) Center: The ADEAR Center website will help you find current, comprehensive Alzheimer’s disease (AD) information and resources from the National Institute on Aging (NIA).
  • Alzheimer Research Forum: The Alzheimer Research Forum reports on the latest scientific findings from basic research to clinical trials; creates and maintains public databases of essential research data and reagents, and produces discussion forums to contribute to the global effort to cure Alzheimer’s disease.
  • American Association of Retired Persons (AARP): The AARP is a consumer group that posts policy statements and position papers.
  • American Geriatrics Society (AGS): AGS provides professional and consumer information.
  • Assisted Living: Personal Care: This is a checklist from the National Caregivers Library of personal and health care questions to ask when you and your loved one visit an assisted living facility
  • Assisted Living: Quality of Life: This is a checklist of questions from the National Caregivers Library dealing with socializing, meals, safety and other issues to consider when you and your loved one visit an assisted living facility.
  • Assisted Living: Costs and Contracts: This is a list of financial questions to ask when you and your loved one visit an assisted living facility.
  • California Advocates for Nursing Home Reform (CANHR): CANHR is a nonprofit advocacy organization dedicated to improving the choices, care and quality of life for California’s long term care consumers.
  • California Alzheimer’s Disease Centers (CADCs): The CADCs effectively and efficiently improve AD health care delivery, provide specialized training and education to health care professionals and others, and advance the diagnosis and treatment of AD through a network of ten dementia care Centers of Excellence at California medical schools.
  • California Caregiver Resource Center: Information, education, respite, care planning and support for families and friends caring for adults with chronic, disabling health conditions.
  • CalQualityCare.org: This website provides information about long term care options and quality ratings for different providers in California.
  • CaringBridge: CaringBridge provides free, easy-to-create and use websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier.
  • Caring Connections: Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation.
  • Department of Health and Human Services Healthfinder: Health issues from food, safety, government health, prevention and self-care from children to seniors.
  • Department of Motor Vehicles (DMV): Information about the DMV (of California).
  • Family Caregiver Alliance: Caregiver resource center for brain impaired adults, support groups, education, care planning, research and advocacy.
  • Medicare: Information about the federal health insurance program for people age 65 or older.
  • National Institute on Aging: The NIA has many free publications
  • Next Step in Care: Information and advice to help family caregivers and health care providers plan safe and smooth transitions for patients with careful planning, clear communication and ongoing coordination.
  • PayingForSeniorCare.com and Eldercare Financial Resource Locator Tool: this website helps families and caregivers locate information about long-term care resources for their loved ones and find the public and private programs available to assist in covering the cost of such care.
  • PubMED: PubMed, a free service of the National Library of Medicine and the National Institutes of Health, includes approximately 20 million citations for biomedical literature.
  • Social Security information: general information about social security, legislation, benefits and public information resources.
  • UCSF Neurology Caregiver Corner: A listing of resources put together by a UCSF multidisciplinary group seeking to make information easily accessible for friends and family caregivers caring for someone with a neurological condition.
  • UCSF Osher Center for Integrative Medicine: has a series of materials produced as part of the Caregivers Project to support family caregivers of loved ones with serious illness.
  • Whole Brain Atlas: A primer on neuroimaging and anatomy.
Citation

http://memory.ucsf.edu/caregiving/planning

© 2017 The Regents of the University of California

 

Helping Family and Friends Understand Alzheimer’s Disease

(National Institutes of Health) When you learn that someone has Alzheimer’s disease, you may wonder when and how to tell your family and friends. You may be worried about how others will react to or treat the person. Realize that family and friends often sense that something is wrong before they are told. Alzheimer’s disease is hard to keep secret.

There’s no single right way to tell others about Alzheimer’s disease. When the time seems right, be honest with family, friends, and others. Use this as a chance to educate them about Alzheimer’s. You can:

  • Tell friends and family about Alzheimer’s disease and its effects.
  • Share articles, websites, and other information about the disease.
  • Tell them what they can do to help. Let them know you need breaks.

Tips for Communicating

You can help family and friends understand how to interact with the person with Alzheimer’s disease. Here are some tips:

  • Help family and friends realize what the person can still do and how much he or she still can understand.
  • Give visitors suggestions about how to start talking with the person. For example, make eye contact and say, “Hello George, I’m John. We used to work together.”
  • Help them avoid correcting the person with Alzheimer’s if he or she makes a mistake or forgets something. Instead, ask visitors to respond to the feelings expressed or talk about something different.
  • Help family and friends plan fun activities with the person, such as going to family reunions or visiting old friends. A photo album or other activity can help if the person is bored or confused and needs to be distracted.

Remind visitors to:

  • Visit at times of day when the person with Alzheimer’s is at his or her best.
  • Be calm and quiet. Don’t use a loud voice or talk to the person as if he or she were a child.
  • Respect the person’s personal space, and don’t get too close.
  • Not take it personally if the person does not recognize you, is unkind, or gets angry.

When You’re Out in Public

Some caregivers carry a card that explains why the person with Alzheimer’s might say or do odd things. For example, the card could read,

“My family member has Alzheimer’s disease. He or she might say or do things that are unexpected. Thank you for your understanding.”

The card allows you to let others know about the person’s Alzheimer’s disease without the person hearing you. It also means you don’t have to keep explaining things.

Helping Children Understand AD

When a family member has AD, it affects everyone in the family, including children and grandchildren. It’s important to talk to them about what is happening. How much and what kind of information you share depends on the child’s age. It also depends on his or her relationship to the person with AD.

Give children information about AD that they can understand. There are good books about AD for children of all ages. Some are listed on the Alzheimer’s Disease Education and Referral (ADEAR) Center website, www.nia.nih.gov/alzheimers.

Here are some other suggestions to help children understand what is happening:

  • Answer their questions simply and honestly. For example, you might tell a young child, “Grandma has an illness that makes it hard for her to remember things.”
  • Help them know that their feelings of sadness and anger are normal.
  • Comfort them. Tell them no one caused the disease. Young children may think they did something to hurt their grandparent.

If the child lives in the same house as someone with AD:

  • Don’t expect a young child to help take care of or “babysit” the person with AD.
  • Make sure the child has time for his or her own interests and needs, such as playing with friends, going to school activities, or doing homework.
  • Make sure you spend time with your child, so he or she doesn’t feel that all your attention is on the person with AD.
  • Help the child understand your feelings. Be honest about your feelings when you talk with a child, but don’t overwhelm him or her.

Many younger children will look to you to see how to act around the person with AD. Show children they can still talk with the person, and help them enjoy things each day. Doing fun things together can help both the child and the person with AD.

Here are some things they might do:

  • Do simple arts and crafts.
  • Play music.
  • Sing.
  • Look through photo albums.
  • Read stories out loud.

Some children may not talk about their negative feelings, but you may see changes in how they act. Problems at school, with friends, or at home can be a sign that they are upset. You may want to ask a school counselor or a social worker to help your child understand what is happening and learn how to cope. Be sure to check with your child often to see how he or she is feeling.

A teenager might find it very hard to accept how the person with AD has changed. He or she may find the changes upsetting or embarrassing and not want to be around the person. It’s a good idea to talk with teenagers about their concerns and feelings. Don’t force them to spend time with the person who has AD. This could make things worse.

Respite Care

If the stress of living with someone who has AD becomes too great for a child, think about placing the person with AD into a respite care facility. Then, both you and your child can get a much-needed break. See “Respite Services” for more information about respite care.

Other Resources

For more caregiving tips and other resources:

Citation

https://www.nia.nih.gov/alzheimers/publication/helping-family-and-friends-understand-alzheimers-disease

National Institute on Aging

 

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.

 

Advance Care Planning Tips

(NIH) Advance care planning is not just about old age. At any age, a medical crisis could leave someone too ill to make his or her own healthcare decisions. Even if you are not sick now, making healthcare plans for the future is an important step toward making sure you get the medical care you would want, even when doctors and family members are making the decisions for you.

More than one out of four older Americans face questions about medical treatment near the end of life but are not capable of making those decisions. This tip sheet will discuss some questions you can think about now and describe ways to share your wishes with others. Write them down or at least talk about them with someone who would make the decisions for you. Knowing how you would decide might take some of the burden off family and friends.

What Is Advance Care Planning?

Advance care planning involves learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know about your preferences, often by putting them into an advance directive. An advance directive is a legal document that goes into effect only if you are incapacitated and unable to speak for yourself. This could be the result of disease or severe injury—no matter how old you are. It helps others know what type of medical care you want. It also allows you to express your values and desires related to end-of-life care. You might think of an advance directive as a living document—one that you can adjust as your situation changes because of new information or a change in your health.

Medical Research and Advance Care Planning

Medical research plays an important role in the health of Americans of all ages. Because of advances in medicine and in public health, Americans are living longer and staying healthier as they grow older. The National Institute on Aging (NIA) supports much of the research around the country that looks at how people age and how to improve their health in their later years. NIA is part of the National Institutes of Health (NIH), the nation’s medical research agency.

Some NIA-supported research focuses on advance care planning, including examining why people might complete advance directives and the effect of these directives on end-of-life care. In one study, for example, scientists funded by NIA found that advance directives can make a difference and that people who document their preferences in this way are more likely to get the care they prefer at the end of life than people who do not.

Decisions That Could Come Up Near Death

Sometimes when doctors believe a cure is no longer possible and you are dying, decisions must be made about the use of emergency treatments to keep you alive. Doctors can use several artificial or mechanical ways to try to do this. Decisions that might come up at this time relate to:

  • CPR (cardiopulmonary resuscitation)
  • ventilator use
  • artificial nutrition (tube feeding) or artificial hydration (intravenous fluids)
  • comfort care

CPR. CPR (cardiopulmonary resuscitation) might restore your heartbeat if your heart stops or is in a life-threatening abnormal rhythm. The heart of a young, otherwise healthy person might resume beating normally after CPR. An otherwise healthy older person, whose heart is beating erratically or not beating at all, might also be helped by CPR. CPR is less likely to work for an older person who is ill, can’t be successfully treated, and is already close to death. It involves repeatedly pushing on the chest with force, while putting air into the lungs. This force has to be quite strong, and sometimes ribs are broken or a lung collapses. Electric shocks known as defibrillation and medicines might also be used as part of the process.

Ventilator use. Ventilators are machines that help you breathe. A tube connected to the ventilator is put through the throat into the trachea (windpipe) so the machine can force air into the lungs. Putting the tube down the throat is called intubation. Because the tube is uncomfortable, medicines are used to keep you sedated (unconscious) while on a ventilator. If you can’t breathe on your own after a few days, a doctor may perform a tracheotomy or “trach” (rhymes with “make”). During this bedside surgery, the tube is inserted directly into the trachea through a hole in the neck. For long-term help with breathing, a trach is more comfortable, and sedation is not needed. People using such a breathing tube aren’t able to speak without special help because exhaled air goes out of the trach rather than past their vocal cords.

Artificial nutrition or artificial hydration. A feeding tube and/or intravenous (IV) liquids are sometimes used to provide nutrition when a person is not able to eat or drink. These measures can be helpful if you are recovering from an illness. However, if you are near death, these could actually make you more uncomfortable. For example, IV liquids, which are given through a plastic tube put into a vein, can increase the burden on failing kidneys. Or if the body is shutting down near death, it is not able to digest food properly, even when provided through a feeding tube. At first, the feeding tube is threaded through the nose down to the stomach. In time, if tube feeding is still needed, the tube is surgically inserted into the stomach.

Comfort care. Comfort care is anything that can be done to soothe you and relieve suffering while staying in line with your wishes. Comfort care includes managing shortness of breath; offering ice chips for dry mouth; limiting medical testing; providing spiritual and emotional counseling; and giving medication for pain, anxiety, nausea, or constipation. Often this is done through hospice, which may be offered in the home, in a hospice facility, in a skilled nursing facility, or in a hospital. With hospice, a team of healthcare providers works together to provide the best possible quality of life in a patient’s final days, weeks, or months. After death, the hospice team continues to offer support to the family. Learn more about providing comfort at the end of life.

What Is Hospice Care? What Is Palliative Care?

Hospice care is intended to provide comfort to you and your family during a life-threatening illness, rather than provide treatments to cure the illness. Palliative care is similar to comfort care in hospice, but it is offered along with any medical treatments you might be receiving for a life-threatening illness, such as chemotherapy for cancer or dialysis for kidney failure. The main goal of both hospice and palliative care is to keep you comfortable. In addition, you can always choose to move from hospice to palliative care if you want to pursue treatments to cure your illness.

Getting Started

Start by thinking about what kind of treatment you do or do not want in a medical emergency. It might help to talk with your doctor about how your present health conditions might influence your health in the future. For example, what decisions would you or your family face if your high blood pressure leads to a stroke?

If you don’t have any medical issues now, your family medical history might be a clue to thinking about the future. Talk to your doctor about decisions that might come up if you develop health problems similar to those of other family members.

In considering treatment decisions, your personal values are key. Is your main desire to have the most days of life, or to have the most life in your days? What if an illness leaves you paralyzed or in a permanent coma and you need to be on a ventilator? Would you want that?

What makes life meaningful to you? You might want doctors to try CPR if your heart stops or to try using a ventilator for a short time if you’ve had trouble breathing, if that means that, in the future, you could be well enough to spend time with your family. Even if the emergency leaves you simply able to spend your days listening to books on tape or gazing out the window watching the birds and squirrels compete for seeds in the bird feeder, you might be content with that.

But, there are many other scenarios. Here are a few. What would you decide?

  • If a stroke leaves you paralyzed and then your heart stops, would you want CPR? What if you were also mentally impaired by a stroke—does your decision change?
  • What if you develop dementia, don’t recognize family and friends, and, in time, cannot feed yourself? Would you want a feeding tube used to give you nutrition?
  • What if you are permanently unconscious and then develop pneumonia? Would you want antibiotics and a ventilator used?

For some people, staying alive as long as medically possible is the most important thing. An advance directive can help make sure that happens.

Your decisions about how to handle any of these situations could be different at age 40 than at age 85. Or they could be different if you have an incurable condition as opposed to being generally healthy. An advance directive allows you to provide instructions for these types of situations and then to change the instructions as you get older or if your viewpoint changes.

Do you or a family member have Alzheimer’s disease?

Many people are unprepared to deal with the legal and financial consequences of a serious illness such as Alzheimer’s disease. Advance planning can help people with Alzheimer’s and their families clarify their wishes and make well-informed decisions about health care and financial arrangements.

Learn more about legal and financial planning for people with Alzheimer’s disease.

Making Your Wishes Known

There are two elements in an advance directive—a living will and a durable power of attorney for health care. There are also other documents that can supplement your advance directive or stand alone. You can choose which documents to create, depending on how you want decisions to be made. These documents include:

  • living will
  • durable power of attorney for health care
  • other documents discussing DNR (do not resuscitate) orders, organ and tissue donation, dialysis, and blood transfusions

Living will. A living will is a written document that helps you tell doctors how you want to be treated if you are dying or permanently unconscious and cannot make decisions about emergency treatment. In a living will, you can say which of the procedures described above you would want, which ones you wouldn’t want, and under which conditions each of your choices applies.

Durable power of attorney for health care. A durable power of attorney for health care is a legal document naming a healthcare proxy, someone to make medical decisions for you at times when you might not be able to do so. Your proxy, also known as a surrogate or agent, should be familiar with your values and wishes. This means that he or she will be able to decide as you would when treatment decisions need to be made. A proxy can be chosen in addition to or instead of a living will. Having a healthcare proxy helps you plan for situations that cannot be foreseen, like a serious auto accident.

A durable power of attorney for health care enables you to be more specific about your medical treatment than a living will.

Some people are reluctant to put specific health decisions in writing. For them, naming a healthcare agent might be a good approach, especially if there is someone they feel comfortable talking with about their values and preferences.

Other advance care planning documents. You might also want to prepare separate documents to express your wishes about a single medical issue or something not already covered in your advance directive. A living will usually covers only the specific life-sustaining treatments discussed earlier. You might want to give your healthcare proxy specific instructions about other issues, such as blood transfusion or kidney dialysis. This is especially important if your doctor suggests that, given your health condition, such treatments might be needed in the future.

Two medical issues that might arise at the end of life are DNR orders and organ and tissue donation.

A DNR (do not resuscitate) order tells medical staff in a hospital or nursing facility that you do not want them to try to return your heart to a normal rhythm if it stops or is beating unevenly. Even though a living will might say CPR is not wanted, it is helpful to have a DNR order as part of your medical file if you go to a hospital. Posting a DNR next to your bed might avoid confusion in an emergency situation. Without a DNR order, medical staff will make every effort to restore the normal rhythm of your heart. A non-hospital DNR will alert emergency medical personnel to your wishes regarding CPR and other measures to restore your heartbeat if you are not in the hospital. A similar document that is less familiar is called a DNI (do not intubate) order. A DNI tells medical staff in a hospital or nursing facility that you do not want to be put on a breathing machine.

Organ and tissue donation allows organs or body parts from a generally healthy person who has died to be transplanted into people who need them. Commonly, the heart, lungs, pancreas, kidneys, corneas, liver, and skin are donated. There is no age limit for organ and tissue donation. You can carry a donation card in your wallet. Some states allow you to add this decision to your driver’s license. Some people also include organ donation in their advance care planning documents. At the time of death, family may be asked about organ donation. If those close to you, especially your proxy, know how you feel about organ donation, they will be ready to respond.

What About Pacemakers and ICDs?

Some people have pacemakers to help their hearts beat regularly. If you have one and are near death, it may not necessarily keep you alive. But, you might have an ICD (implantable cardioverter-defibrillator) placed under your skin to shock your heart back into regular beatings if the rhythm becomes irregular. If other life-sustaining measures are not used, the ICD may also be turned off. You need to state in your advance directive what you want done if the doctor suggests it is time to turn it off.

Selecting Your Healthcare Proxy

If you decide to choose a proxy, think about people you know who share your views and values about life and medical decisions. Your proxy might be a family member, a friend, your lawyer, or someone with whom you worship. It’s a good idea to also name an alternate proxy. It is especially important to have a detailed living will if you choose not to name a proxy.

You can decide how much authority your proxy has over your medical care—whether he or she is entitled to make a wide range of decisions or only a few specific ones. Try not to include guidelines that make it impossible for the proxy to fulfill his or her duties. For example, it’s probably not unusual for someone to say in conversation, “I don’t want to go to a nursing home,” but think carefully about whether you want a restriction like that in your advance directive. Sometimes, for financial or medical reasons, that may be the best choice for you.

Of course, check with those you choose as your healthcare proxy and alternate before you name them officially. Make sure they are comfortable with this responsibility.

Making It Official

Once you have talked with your doctor and have an idea of the types of decisions that could come up in the future and whom you would like as a proxy, if you want one at all, the next step is to fill out the legal forms detailing your wishes. A lawyer can help but is not required. If you decide to use a lawyer, don’t depend on him or her to help you understand different medical treatments. That’s why you should start the planning process by talking with your doctor.

Many states have their own advance directive forms. Your local Area Agency on Aging can help you locate the right forms. You can find your area agency phone number by calling the Eldercare Locator toll-free at 1-800-677-1116 or going online at www.eldercare.gov.

Some states want your advance directive to be witnessed; some want your signature notarized. A notary is a person licensed by the state to witness signatures. You might find a notary at your bank, post office, or local library, or call your insurance agent. Some notaries charge a fee.

Some people spend a lot of time in more than one state—for example, visiting children and grandchildren. If that’s your situation also, you might consider preparing an advance directive using forms for each state—and keep a copy in each place, too.

Future Directions

A number of states are developing or starting to use an advance care planning form known as POLST (Physician Orders for Life-Sustaining Treatment) or MOLST (Medical Orders for Life-Sustaining Treatment). These forms serve in addition to your advance directive. They make it possible for you to provide more detailed guidance about your medical care preferences. Your doctor will talk with you and/or your family for guidance, but the form is filled out by the doctor or, sometimes, a nurse practitioner or physician’s assistant. Once signed by your doctor, this form has the force of any other medical order. These forms are often printed on brightly colored paper so they are easily found in a medical or hospital file. Check with your state department of health to find out if this form is available where you live.

After You Set Up Your Advance Directive

There are key people who should be told that you have an advance directive. Give copies to your healthcare proxy and alternate proxy. Give your doctor a copy for your medical records. Tell key family members and friends where you keep a copy. If you have to go to the hospital, give staff there a copy to include in your records. Because you might change your advance directive in the future, it’s a good idea to keep track of who receives a copy.

Review your advance care planning decisions from time to time—for example, every 10 years, if not more often. You might want to revise your preferences for care if your situation or your health changes. Or, you might want to make adjustments if you receive a serious diagnosis; if you get married, separated, or divorced; if your spouse dies; or if something happens to your proxy or alternate. If your preferences change, you will want to make sure your doctor, proxy, and family know about them.

Still Not Sure?

What happens if you have no advance directive or have made no plans and you become unable to speak for yourself? In such cases, the state where you live will assign someone to make medical decisions on your behalf. This will probably be your spouse, your parents if they are available, or your children if they are adults. If you have no family members, the state will choose someone to represent your best interests.

Always remember, an advance directive is only used if you are in danger of dying and need certain emergency or special measures to keep you alive but are not able to make those decisions on your own. An advance directive allows you to continue to make your wishes about medical treatment known.

Looking Toward the Future

Nobody can predict the future. You may never face a medical situation where you are unable to speak for yourself and make your wishes known. But having an advance directive may give you and those close to you some peace of mind.

Advance Directive Wallet Card

You might want to make a card to carry in your wallet indicating that you have an advance directive and where it is kept. Here is a slightly revised example of the wallet card offered by the Office of the Attorney General in Maryland. It uses the phrase “healthcare agent” instead of “healthcare proxy.” You might want to print this one to fill out and carry with you. It can also be found online at www.oag.state.md.us/Healthpol/adDir_cards.pdf (PDF, 178K).

Printable wallet card specifying advance directive information

 

For More Information

Other federal and non-federal resources with information about advance directives include:

Caring Connections
National Hospice and Palliative Care Organization

1-800-658-8898 (toll-free)
1-877-658-8896 (toll-free/multilingual)
www.caringinfo.org

Caring Conversations
Center for Practical Bioethics

Harzfeld Building
1111 Main Street, Suite 500
Kansas City, MO 64105-2116
1-800-344-3829 (toll-free)
www.practicalbioethics.org

American Bar Association
321 North Clark Street
Chicago, IL 60654
1-800-285-2221
www.americanbar.org
(search for “Consumer’s Tool Kit for Health Care Advance Planning”)

Donate Life America
701 East Byrd Street, 16th floor
Richmond, VA 23219
1-804-377-3580
www.donatelife.net

National Legal Resource Center
www.nlrc.aoa.gov

OrganDonor.gov
Health Resources and Services Administration
1-888-275-4772 (toll-free)
www.organdonor.gov

POLST (Physician Orders for Life-Sustaining Treatment)
www.polst.org

Put It In Writing
American Hospital Association

155 North Wacker Drive
Chicago, IL 60606
1-800-424-4301 (toll-free)
www.putitinwriting.org

The Living Bank
P.O. Box 6725
Houston, TX 77265
1-800-528-2971 (toll-free)
www.livingbank.org

For more information about health and aging, contact:

National Institute on Aging Information Center
P.O. Box 8057
Gaithersburg, MD 20898-8057
1-800-222-2225 (toll-free)
1-800-222-4225 (TTY/toll-free)
www.nia.nih.gov
www.nia.nih.gov/espanol

To order free publications (in English or Spanish) or sign up for email alerts, go to: www.nia.nih.gov/health

Visit www.nihseniorhealth.gov a senior-friendly website from the National Institute on Aging and the National Library of Medicine. This website has health and wellness information for older adults. Special features make it simple to use. For example, you can click on a button to make the type larger.

Citation

https://www.nia.nih.gov/health/publication/advance-care-planning

National Institute on Aging

 

Dementia and Forgetfulness: Knowing When to Ask for Help

(National Institutes of Health)

Maria has been a teacher for 35 years. Teaching fills her life and gives her a sense of accomplishment, but recently she has begun to forget details and has become more and more disorganized. At first, she laughed it off, but her memory problems have worsened.

Her family and friends have been sympathetic but are not sure what to do. Parents and school administrators are worried about Maria’s performance in the classroom.

The principal has suggested she see a doctor. Maria is angry with herself and frustrated, and she wonders whether these problems are signs of Alzheimer’s disease or just forgetfulness that comes with getting older.

Many people worry about becoming forgetful. They think forgetfulness is the first sign of Alzheimer’s disease. Over the past few years, scientists have learned a lot about memory and why some kinds of memory problems are serious but others are not.

Age-Related Changes In Memory

Forgetfulness can be a normal part of aging. As people get older, changes occur in all parts of the body, including the brain. As a result, some people may notice that it takes longer to learn new things, they don’t remember information as well as they did, or they lose things like their glasses. These usually are signs of mild forgetfulness, not serious memory problems.

Some older adults also find that they don’t do as well as younger people on complex memory or learning tests. Scientists have found, though, that given enough time, healthy older people can do as well as younger people do on these tests. In fact, as they age, healthy adults usually improve in areas of mental ability such as vocabulary.

Other Causes Of Memory Loss

Some memory problems are related to health issues that may be treatable. For example, medication side effects, vitamin B12 deficiency, chronic alcoholism, tumors or infections in the brain, or blood clots in the brain can cause memory loss or possibly dementia (see more on dementia, below). Some thyroid, kidney, or liver disorders also can lead to memory loss. A doctor should treat serious medical conditions like these as soon as possible.

Emotional problems, such as stress, anxiety, or depression, can make a person more forgetful and can be mistaken for dementia. For instance, someone who has recently retired or who is coping with the death of a spouse, relative, or friend may feel sad, lonely, worried, or bored. Trying to deal with these life changes leaves some people confused or forgetful.

The confusion and forgetfulness caused by emotions usually are temporary and go away when the feelings fade. The emotional problems can be eased by supportive friends and family, but if these feelings last for a long time, it is important to get help from a doctor or counselor. Treatment may include counseling, medication, or both.

More Serious Memory Problems

For some older people, memory problems are a sign of a serious problem, such as mild cognitive impairment or dementia. People who are worried about memory problems should see a doctor. The doctor might conduct or order a thorough physical and mental health evaluation to reach a diagnosis. Often, these evaluations are conducted by a neurologist, a physician who specializes in problems related to the brain and central nervous system.

A complete medical exam for memory loss should review the person’s medical history, including the use of prescription and over-the-counter medicines, diet, past medical problems, and general health. A correct diagnosis depends on accurate details, so in addition to talking with the patient, the doctor might ask a family member, caregiver, or close friend for information.

Blood and urine tests can help the doctor find the cause of the memory problems or dementia. The doctor also might do tests for memory loss and test the person’s problem-solving and language abilities. A computed tomography (CT) or magnetic resonance imaging (MRI) brain scan may help rule out some causes of the memory problems.

Amnestic Mild Cognitive Impairment (MCI). Some people with memory problems have a condition called amnestic mild cognitive impairment, or amnestic MCI. People with this condition have more memory problems than normal for people their age, but their symptoms are not as severe as those of Alzheimer’s disease, and they are able to carry out their normal daily activities.

Signs of MCI include misplacing things often, forgetting to go to important events and appointments, and having trouble coming up with desired words. Family and friends may notice memory lapses, and the person with MCI may worry about losing his or her memory. These worries may prompt the person to see a doctor for diagnosis.

Researchers have found that more people with MCI than those without it go on to develop Alzheimer’s within a certain timeframe. However, not everyone who has MCI develops Alzheimer’s disease. Studies are underway to learn why some people with MCI progress to Alzheimer’s and others do not.

There currently is no standard treatment for MCI. Typically, the doctor will regularly monitor and test a person diagnosed with MCI to detect any changes in memory and thinking skills over time. There are no medications approved for use for MCI.

Dementia. Dementia is the loss of thinking, memory, and reasoning skills to such an extent that it seriously affects a person’s ability to carry out daily activities. Dementia is not a disease itself but a group of symptoms caused by certain diseases or conditions such as Alzheimer’s. People with dementia lose their mental abilities at different rates.

Symptoms may include:

  • Being unable to remember things
  • Asking the same question or repeating the same story over and over
  • Becoming lost in familiar places
  • Being unable to follow directions
  • Getting disoriented about time, people, and places
  • Neglecting personal safety, hygiene, and nutrition

Two of the most common forms of dementia in older people are Alzheimer’s disease and vascular dementia. These types of dementia cannot be cured at present.

In Alzheimer’s disease, changes to nerve cells in certain parts of the brain result in the death of a large number of cells. Symptoms of Alzheimer’s begin slowly and worsen steadily as damage to nerve cells spreads throughout the brain. As time goes by, forgetfulness gives way to serious problems with thinking, judgment, recognizing family and friends, and the ability to perform daily activities like driving a car or handling money. Eventually, the person needs total care.

In vascular dementia, a series of strokes or changes in the brain’s blood supply leads to the death of brain tissue. Symptoms of vascular dementia can vary but usually begin suddenly, depending on where in the brain the strokes occurred and how severe they were. The person’s memory, language, reasoning, and coordination may be affected. Mood and personality changes are common as well.

It’s not possible to reverse damage already caused by a stroke, so it’s very important to get medical care right away if someone has signs of a stroke. It’s also important to take steps to prevent further strokes, which worsen vascular dementia symptoms. Some people have both Alzheimer’s and vascular dementia.

Keeping Your Memory Sharp

People with some forgetfulness can use a variety of techniques that may help them stay healthy and maintain their memory and mental skills. Here are some tips:

  • Plan tasks, make “to do” lists, and use memory aids like notes and calendars. Some people find they remember things better if they mentally connect them to other meaningful things, such as a familiar name, song, book, or TV show.
  • Develop interests or hobbies and stay involved in activities that can help both the mind and body.
  • Engage in physical activity and exercise. Several studies have associated exercise (such as walking) with better brain function, although more research is needed to say for sure whether exercise can help to maintain brain function or prevent or delay symptoms of Alzheimer’s.
  • Limit alcohol use. Although some studies suggest that moderate alcohol use has health benefits, heavy or binge drinking over time can cause memory loss and permanent brain damage.
  • Find activities, such as exercise or a hobby, to relieve feelings of stress, anxiety, or depression. If these feelings last for a long time, talk with your doctor.

 

Treatment for Dementia

A person with dementia should be under a doctor’s care. The doctor might be a neurologist, family doctor, internist, geriatrician, or psychiatrist. He or she can treat the patient’s physical and behavioral problems (such as aggression, agitation, or wandering) and answer the many questions that the person or family may have.

People with dementia caused by Alzheimer’s disease may be treated with medications. Four medications are approved by the U.S. Food and Drug Administration to treat Alzheimer’s. Donepezil (Aricept®), rivastigmine (Exelon®), and galantamine (Razadyne®) are used to treat mild to moderate Alzheimer’s (donepezil has been approved to treat severe Alzheimer’s as well). Memantine (Namenda® and Namzaric®) are used to treat moderate to severe Alzheimer’s. These drugs may help maintain thinking, memory, and speaking skills, and may lessen certain behavioral problems for a few months to a few years in some people. However, they don’t stop Alzheimer’s disease from progressing. Many studies are investigating medications and other interventions to prevent or delay Alzheimer’s disease, as well as cognitive decline.

People with vascular dementia should take steps to prevent further strokes. These steps include controlling high blood pressure, monitoring and treating high cholesterol and diabetes, and not smoking. Studies are underway to develop medicines to reduce the severity of memory and thinking problems that come with vascular dementia. Other studies are looking at drugs to relieve certain symptoms of this type of dementia.

Family members and friends can help people in the early stages of dementia to continue their daily routines, physical activities, and social contacts. People with dementia should be kept up to date about the details of their lives, such as the time of day, where they live, and what is happening at home or in the world. Memory aids may help. Some families find that a big calendar, a list of daily plans, notes about simple safety measures, and written directions describing how to use common household items are useful aids.

What You Can Do

If you’re concerned that you or someone you know has a serious memory problem, talk with your doctor. He or she may be able to diagnose the problem or refer you to a specialist, such as a neurologist or geriatric psychiatrist. Healthcare professionals who specialize in Alzheimer’s and other dementias can recommend ways to manage the problem or suggest treatment or services that might help. More information is available from the organizations listed below.

Consider participating in clinical trials or studies. People with Alzheimer’s disease, MCI, or a family history of Alzheimer’s and healthy people with no memory problems and no family history of Alzheimer’s may be able to take part in clinical trials, which may help themselves or future generations.

To find out more about participating in Alzheimer’s and related clinical trials, call the Alzheimer’s Disease Education and Referral (ADEAR) Center toll-free at 1-800-438-4380 or visit the ADEAR Center website.

You can search for trials at www.nia.nih.gov/alzheimers/clinical-trials.

For More Information About Memory Loss

Alzheimer’s Disease Education and Referral (ADEAR) Center
1-800-438-4380 (toll-free)
adear@nia.nih.gov (email)
www.nia.nih.gov/alzheimers

The National Institute on Aging’s ADEAR Center offers information and publications in English and Spanish for families, caregivers, and professionals on diagnosis, treatment, patient care, caregiver needs, long-term care, education and training, and research related to Alzheimer’s disease.

Alzheimer’s Association
1-800-272-3900 (toll-free)
1-866-403-3073 (TTY/toll-free)
info@alz.org (email)
www.alz.org

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

Eldercare Locator
1-800-677-1116 (toll-free)
www.eldercare.gov

National Library of Medicine
MedlinePlus

www.medlineplus.gov

For more information on health and aging, contact:

National Institute on Aging Information Center
P.O. Box 8057
Gaithersburg, MD 20898-8057
1-800-222-2225 (toll-free)
1-800-222-4225 (TTY/toll-free)
niaic@nia.nih.gov (email)
www.nia.nih.gov
www.nia.nih.gov/espanol

Sign up for regular email alerts about new publications and find other information from the NIA.

Visit www.nihseniorhealth.gov, a senior-friendly website from the National Institute on Aging and the National Library of Medicine. This website has health and wellness information for older adults. Special features make it simple to use. For example, you can click on a button to make the type larger.

National Institute on Aging
National Institutes of Health
U.S. Department of Health & Human Services

Citation

https://www.nia.nih.gov/health/publication/forgetfulness

National Institute on Aging

 

Topics to Discuss Now with Your Aging Parents

(Administration on Aging) Face the Facts – Financial, legal, health care, and long-term care issues affect families, not just individuals. Aging parents may not understand how estate planning can affect their own financial status as well as that of their children.

The Eldercare Locator produced this guide to help families “face the facts” about important topics to discuss with aging parents. It addresses key areas of concern, suggested questions to ask, and ways in which families might initiate conversations.

Key Considerations

  1. Determine what benefits are provided by Social Security and any pensions. Then, determine whether your parents are eligible for other financial programs.
  2. Ensure that each family member has a living will. Make sure you know the location of all insurance policies, wills, trust documents, investment and banking records, and tax returns.
  3. Investigate what type of long-term care insurance coverage might be best for your parents. Note that premiums are usually lower when policies are purchased at younger ages.
  4. Identify community services that can help your parents maintain independence for as long as possible. Learn what housing options are available to meet their changing needs.

Financial Organization

Your parent may already be receiving or eligible for a variety of financial resources. Social Security is the federal program that provides retirees a regular income based on work history as well as benefits to workers with disabilities. Long-time workers usually have pensions that are retirement compensation plans either fully managed by the employer, or involve employee contributions, such as a Tax-Deferred Annuity (TDA) or Individual Retirement Account (IRA). Some people have “lost” a pension they earned, while others forget about a retirement account set up many years prior. Low-income individuals with disabilities or age 65 and older may also be eligible for monthly cash benefits through Supplemental Security Income (SSI).

Ask…
What type of retirement income do they receive?
Are pension savings from all jobs being collected?
Is there a need to apply for SSI benefits?
Who can access important financial information in case of emergency?
Where do your parents keep these important documents?

Legal Preparation

Wills and power of attorney may not be topics your relatives want to discuss; however, these issues need to be addressed to make sure that assets are properly taken care of and that medical treatment preferences are known. A will directs how a person wants property to be distributed after death and appoints a trusted person to be the executor. A durable power of attorney provides written authorization for a person you name to act on your behalf for whatever financial or health care purpose you spell out. An advance directive is a legal document that provides directions for your health care if you are unable to speak for yourself.

Ask…
Do your parents have a will?
Are their important legal documents up to date?
What other legal matters are you concerned about?
Have your parents executed a durable power of attorney or considered whom they want to make financial or health decisions if they are unable to do so?

Health Insurance

Health care is a high-cost necessity, so it is crucial to know what is available and what your parents are eligible to receive. Most adults over age 65 are covered by Medicare, the federal health insurance program that helps pay medical expenses for older Americans and younger people with disabilities. However, Medicare does not cover all needs, such as long-term care, including nursing homes. Medicare Supplement Insurance (also called Medigap) might be necessary to cover additional health costs.

Medicaid, on the other hand, is the federal and state insurance program that helps pay the health care costs of low-income individuals of any age. Long-term care insurance is available through the private market to assist individuals to cover the cost of long-term care services such as home health and nursing home care.

Ask…
As health statuses change, are your parents prepared to meet their long-term care needs?
Do they have proper health insurance coverage (not too much or too little)?
Are they comfortably able to pay for prescription drugs and other out-of pocket health costs?
Who are their doctors and how can they be contacted, if necessary?
Where are their insurance cards, Medicare information, and other important health documents?

Community Services

One of the most useful things that adult children can do for their parents is to provide information about resources that help maintain and enhance independence. Services like home modification are available to help reduce the risk of accidents and make daily activities more comfortable to perform.

There are many community resources that provide related information or services. Find out about support available through Area Agencies on Aging (AAAs) and local providers by contacting the Eldercare Locator at 1-800-677-1116 or http://www.eldercare.gov.

Ask…
Are there home repairs or modifications, such as bathtub railings or an emergency response system, that could help your parents?
Do they need assistance with housekeeping, shopping, or personal care?
If they become homebound, would they need home-delivered meals?
Do they need transportation? If so, what services are available?

Conversation Approaches

Prepare to be open, honest, and non-argumentative when discussing these topics with your loved ones. Consider preparing by doing research about the topics you want to review. Below are some approaches you can take, depending on the personality of the care recipient.

  • Direct: If the care recipient is a ‘no-nonsense’ personality, openly express your concerns and ask for information you need to address specific situations that might arise.
  • Educational: For the relative who needs a delicate push, you might begin by sharing the experience of another caregiver and how it made you realize the need to discuss issues that could help your whole family in the future.
  • Expert: For the relative who refuses to talk about personal issues or tends to accuse others of taking control, seek to make them the expert by asking for their advice about a particular issue. “What type of long-term care plan should I look into?” “Can you recommend someone to help me prepare my will?” This strategy is non-threatening and could lead them to share personal details or let you know where they stand on a subject.

Resources

Citation

http://www.eldercare.gov/Eldercare.NET/Public/Resources/Factsheets/Face_the_Facts.aspx

Administration on Aging

 

Why Do People Die from Alzheimer’s Disease?

(AgingCare.com) Dear Readers: I recently went out for coffee with a friend of mine. She wanted to know if people can actually die from Alzheimer’s disease. I told her that Alzheimer’s is fatal; there is no cure. In late stages of the disease, it affects brain and body functions which leads to death.

Here is a definitive answer from Dr. Maurizio Grimaldi. Grimaldi is the Leader of the Neuropharmacology and Neuroscience Laboratory at Southern Research Institute in Alabama and specialized in clinical pharmacology. He is a co-investigator in the NIH-NINDS Drug Screening for Neurodegenerative Diseases and Stroke.


Q: If Alzheimer’s is a disease of the memory, how do people die from it?

A: Alzheimer’s disease (AD) is very complex and always fatal.

It manifests initially with marked memory failure, but as it progresses, it also has an effect on higher brain functions. In the later stages of the disease, balance and coordination as well as autonomic functions like heart rate, breathing, digestion and sleep cycles are severely affected.

When the clinical picture of the disease is fully developed, a patient will be unable to perform the tasks that keep our bodies alive and functioning. Neurological damage causes the patient to lose the ability to coordinate even simple movements. Eventually, they are unable to walk, communicate, maintain control of their bladder and bowels, feed themselves, chew, and swallow food without significant assistance and careful supervision. The later stages can be both emotionally and physically taxing not only for patients themselves, but also for their family caregivers. At this point, if the subject has not already been discussed, family members may wish to consider hospice care for their loved one.

This lack of self-awareness and self-care, prolonged confinement to a bed, feeding failure and inability to receive proper nutrition and hydration are all factors in the development of other life-threatening diseases. While brain damage associated with AD is the driving force behind the patient’s decline and incapacitation, these secondary illnesses and conditions are actually responsible for causing the patient’s death and are commonly cited as such on death certificates.

The most prevalent cause is a secondary infection, commonly pneumonia. Bacterial infections could be easily remedied with a course of antibiotics in healthy individuals. However, advanced AD patients are usually too frail and immunocompromised to fight, even with the assistance of these drugs. Infections often return after treatment, and many patients or their family members make the decision to forgo aggressive treatment options and/or resuscitation efforts that may cause pain and discomfort for only a short-term benefit.

All of the below conditions can cause or contribute to multiple organ failure and death.

  • Heart attack
  • Dehydration and malnutrition, whether through a voluntary stopping of eating and drinking (VSED) health care directive or the natural dying process
  • Injuries and fractures caused by falls
  • Thromboembolisms
  • Pressure ulcers (bedsores)
  • Stroke
  • Kidney failure
  • Lung infections like aspiration pneumonia due to inhalation of food particles
  • Sepsis (if infections like UTIs and pneumonia spread)

Unfortunately, deaths with a primary cause of Alzheimer’s disease and other forms of dementia are seriously underreported. This is especially true since AD can go unnoticed as it progresses slowly over the course of many years. Furthermore, a significant number of patients never receive an official neurological diagnosis.

Citation

https://www.agingcare.com/articles/if-alzheimer-s-is-a-disease-of-the-memory-how-do-people-die-from-it-133297.htm

2016 AgingCare, LLC. All rights reserved.

 

Early-Onset Alzheimer’s: When Symptoms Begin Before Age 65

(Mayo Clinic) When Alzheimer’s begins in middle age, misdiagnosis may be more likely. This rare form of Alzheimer’s affects work, finances and family.

Early-onset Alzheimer’s is an uncommon form of dementia that strikes people younger than age 65. Glenn E. Smith, Ph.D., a neuropsychologist at Mayo Clinic, Rochester, Minn., answers questions about this condition.

How common is early-onset Alzheimer’s?

Of all the people who have Alzheimer’s disease, about 5 percent develop symptoms before age 65. So if 4 million Americans have Alzheimer’s, at least 200,000 people have the early-onset form of the disease.

Early-onset Alzheimer’s has been known to develop between ages 30 and 40, but that’s very uncommon. It’s more common to see someone in his or her 50s who has the disease.

What causes it?

Some people with early-onset Alzheimer’s have the common form of the disease, and experts don’t know why these people get the disease at a younger age than others do.

For most, however, early-onset Alzheimer’s runs in the family. They’re likely to have a parent or grandparent who also developed Alzheimer’s at a younger age.

Early-onset Alzheimer’s that runs in families is linked to three genes that differ from the APOE gene that can increase your risk of Alzheimer’s in general. The genetic path of inheritance is much stronger in early-onset Alzheimer’s. If you have a genetic mutation in one of those three genes — the APP, PSEN 1 or PSEN 2 — you may develop Alzheimer’s before age 65.

If early-onset Alzheimer’s runs in my family, should I get tested for it?

That’s a personal decision that only you can make. Anyone who’s considering it should pursue genetic counseling — to examine the pros and cons beforehand.

For example, it may be helpful to consider how a positive test may affect your eligibility for long-term care, disability and life insurance.

On the other hand, if you know you carry a form of the early-onset genes, you may be able to take steps to make it easier for you and your loved ones to cope with the effects of the disease.

Does early-onset Alzheimer’s progress at a faster rate?

There’s a perception that it does, but it’s not backed up by hard data. It depends on what endpoint you’re using in your measurement. If the endpoint is admission to a nursing home, that may occur earlier for the early-onset group — but only because their spouses or partners may have more things to deal with, such as children and jobs, than older spouses do.

For example, people who have early-onset Alzheimer’s often still have children at home. They or their spouses or partners may have elderly parents that need care, too. Often, people may find themselves overwhelmed with caring for elderly parents, the loved one with early-onset Alzheimer’s and their children all at the same time.

Fortunately, resources are available to support people with Alzheimer’s to care for themselves and function on their own as long as possible. Many resources are also available for caregivers. Support that can be essential when dealing with early-onset Alzheimer’s.

How important is it to obtain an accurate diagnosis?

Accurate diagnosis is critical so that you can explain your condition to your employer and perhaps arrange a lighter workload or more convenient schedule. For family reasons it is even more crucial.

The diagnosis is fundamental in helping the family respond with appropriate understanding and compassion. In addition, a complete evaluation will rule out reversible forms of dementia that might improve with treatment.

What types of problems occur more often in early-onset Alzheimer’s?

Alzheimer’s disease has a tremendous impact at any age. But we don’t expect to see dementia at a young age, so problems emerging at work or home may be misunderstood. People with early-onset Alzheimer’s may lose relationships or jobs instead of being identified as medically ill or disabled.

What suggestions do you have for coping at work?

Before your condition significantly affects your ability to do your job, talk to your employer. What you can do:

  • Find out if you can switch to a position that better suits your emerging limitations.
  • Familiarize yourself and your spouse, partner or caregiver with your benefits, and find out whether an employee assistance program is available.
  • Explore what benefits may be offered to you under the Americans with Disabilities Act.
  • If you feel overwhelmed, consider reducing your hours or taking time off.

What coping suggestions do you have for couples?

The loss of intimacy is something poignant with early-onset Alzheimer’s. Many people who develop late-onset Alzheimer’s have already been widowed. But couples in their 40s or 50s are often in the middle of their lives together.

Spouses or partners face the possibility of spending many years without an active partner. Losing the romantic component and changing to a caregiver status complicates the relationship. Try to:

  • Communicate about changes you’re experiencing and ways in which your needs also may have changed. Don’t be afraid to ask for help.
  • Find new activities that you can enjoy together.
  • Keep a folder of resources you may need as the disease progresses.
  • Find a counselor who works with couples facing issues you feel challenged by, such as sexuality and changing roles in the relationship.

How do you suggest involving kids?

A diagnosis of early-onset Alzheimer’s also can be difficult for your children, who may not understand what you may go through. Children may blame themselves, become angry or react in any number of ways. Try to:

  • Find activities you can enjoy together.
  • Stay engaged and talk with your children honestly about what you’re experiencing.
  • Find a support group for children, and invite your kids to some of your counseling sessions. Make your child’s school counselor and social worker aware of your condition.
  • Keep a written, video or audio record of your thoughts, feelings and experiences for your children. They’ll appreciate your sharing your wisdom and memories.

Are there financial issues to consider?

People with early-onset Alzheimer’s often have to quit work, and this loss of income is a serious concern. Finances get even tighter if spouses or partners also quit their jobs to become full-time caregivers.

Some medical benefits and many social-support programs won’t provide assistance unless the person with Alzheimer’s is older than age 65. Younger people may need special waivers to get into such programs. What you can do:

  • Talk with a financial planner and an attorney to help you plan for your future financial needs.
  • Ask your employer whether early retirement is an option.
  • Explore what benefits may be available to you through Social Security, Medicare or Medicaid.
  • Organize your financial documents and make sure your spouse or partner understands and can manage your family’s finances.

What’s most important to know?

Key elements of Alzheimer’s care are education and support. This is especially true given the unique social challenges of early-onset Alzheimer’s. Getting connected to services such as support groups can help you identify resources, gain a deeper understanding of the disability and learn ways to adapt.

Remember, you’re not alone. Many resources are available to assist you, your family and caregivers to cope with this disease. Options for support may vary depending on where you live.

Be sure in the early stages of the disease that you and your spouse or partner do research and establish a plan for managing the progression of your condition. Knowing you have a plan and have identified support and resources will help everyone in the future.

Citation

http://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers/art-20048356?utm_source=newsletter&utm_medium=email&utm_campaign=alzheimers-caregiving

References

  1. Younger onset Alzheimer’s: I’m too young to have Alzheimer’s disease. Alzheimer’s Association. http://www.alz.org/search/results.asp?q=early-onset%20alzheimer%E2%80%99s%20disease&as_dt=i#gsc.tab=0&gsc.q=early-onset%20alzheimer%E2%80%99s%20disease&gsc.page=1. Accessed Dec. 17, 2013.
  2. Sherva R, et al. Genetics of Alzheimer’s disease. http://www.uptodate.com/home. Accessed Dec. 17, 2013.
  3. Alzheimer’s disease: Unraveling the mystery. National Institute on Aging. http://www.nia.nih.gov/alzheimers/publication/alzheimers-disease-unraveling-mystery. Accessed Dec. 17, 2013.
  4. Panegyres PK, et al. Difference between early and late onset Alzheimer’s disease. American Journal of Neurodegenerative Disease. 2013;2:300.

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