Resources for Children and Teens About Alzheimer’s Disease

(National Institutes of Health) When someone has Alzheimer’s disease, it affects everyone in the family, including children and grandchildren. This resource list offers a selection of fiction and nonfiction books, articles, websites, and other materials that may help children and teenagers cope when a family member or friend has Alzheimer’s. They can also help parents talk with their children about the disease.

Some of the 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 booksellers.

The items in this resource list are organized alphabetically within four categories:

  • For Young Children
  • For Teenagers
  • For All Children
  • For Parents and Adults Who Work with Children

For Young Children

Always My Grandpa: A Story for Children About Alzheimer’s Disease (by Linda Scacco, 2005, 48 p.)

This picture book tells the story of young Daniel and his grandfather, who has Alzheimer’s disease. Daniel and his mom spend every summer with Grandpa, a fisherman who lives by the sea. Daniel loves the times spent playing baseball, walking on the beach, and hearing Grandpa’s stories. But this summer is different—Daniel is about to learn what Alzheimer’s means for both Grandpa and himself. A note to parents at the end of the book offers advice for helping children deal with common emotions and reactions to a loved one with Alzheimer’s.

Published by Magination Press. Phone: 1-800-374-2721. Email: magination@apa.org . Hardcover $14.95; paperback $9.95.

Do You Have a Moon at Your House? (by Jeannie Johnson, 2005, 39 p.)

This illustrated storybook is about Madison and her grandmother, who have a very special bond. Together they read stories, go on walks, or just sit on the swing and talk. When her grandmother begins to forget things and ask strange questions, Madison is worried. Her mother explains that Grandma has Alzheimer’s disease. The arrival of a special gift gives Madison and her grandmother the chance to reconnect. For ages 6–10.

Available from online booksellers. Hardcover $24.99.

Flowers for Grandpa Dan (by Connie McIntyre, 2005, 32 p.)

In this picture book, a family copes with the illness of Grandpa Dan, an avid gardener who has passed on his hobby to his children and grandchildren. An informational page from the St. Louis chapter of the Alzheimer’s Association suggests ways for adults to talk with children about the disease.

Available from online booksellers. Hardcover $15.19; paperback $12.53.

Getting to Know Ruben Plotnick (by Roz Rosenbluth, 2005, 32 p.)

This illustrated children’s book tells the story of David and his Grandma Rosie, who has dementia. Grandma’s weird and unpredictable behavior threatens to embarrass David in front of Ruben Plotnick, a new friend and the coolest kid in class. One day, Ruben invites himself over to David’s house. When Grandma calls out, “Nate, let’s dance,” Ruben steps up and gallantly dances around the kitchen with her. David discovers the importance of looking beneath the surface to get to know someone. For ages 5–9.

Available from Independent Publishers Group. Phone: 1-800-888-4741. Email: frontdesk@ipgbook.com . Hardcover $15.95; PDF and ePub,$12.95.

Grandfather’s Story Cloth (by Linda Gerdner and Sarah Langford, 2008, 32 p.)

Written in English and Hmong, this illustrated book tells the story of Chersheng and his grandfather, who is starting to forget little things like turning off the water and big things like Chersheng’s name. Chersheng feels sad and helpless when he learns that Grandfather has Alzheimer’s. Then Chersheng’s mother gives him a Hmong story cloth that makes Grandfather’s memories of his life in Laos come alive. For ages 6–10. Includes a discussion guide for parents, teachers, and healthcare providers.

Available from online booksellers. Hardcover $13.21.

Grandpa Doesn’t Know Me Anymore (by Terri Kelley, 2013, 36 p.)

When his grandfather moves into his home, a young boy tries to reconnect with the man he knows. When this isn’t possible, the boy promises to always love and take care of his grandpa.

Available from online booksellers. Paperback $9.49.

It Only Looks Easy (by Pamela Swallow, 2009, 192 p.)

This book tells the story of a girl, Kat, whose dog is nearly killed by Mrs. Lawrence, an elderly driver with Alzheimer’s disease. When Kat visits Mr. and Mrs. Lawrence, she realizes that Mrs. Lawrence is very confused and doesn’t remember what she did. After the visit, Kat’s mother explains Alzheimer’s to her.

Available from Macmillan. Phone: 1-646-307-5151. Paperback $6.99.

The Memory Box (by Mary Bahr, 1992, 32 p.)

This is the story of young Zach, who spends summers on a lake with his beloved grandparents. When Gramps develops Alzheimer’s, his memory sometimes fails, and Zach has to help him out. Zach and his grandparents start a memory box, a wooden box filled with treasures to help everyone remember the times they shared. For ages 6-9.

Available from online booksellers. Paperback $6.88.

My New Granny (by Elisabeth Steinkellner, 2012, 32 p.)

This book tells the heartwarming story of Fini, a young girl who learns to accept her grandmother’s dementia. After Granny moves in, Fini at first is puzzled by her sometimes strange and childlike behaviors. But Fini gets used to her “new Granny” and learns how she can help her mother and the new aide take care of her.

Available from Sky Pony Press. Phone: 1-212- 643-6816. Hardcover $16.95.

Remember Me? Te acuerdas de mi? (by Sue Glass, 2004, 32 p.)

Written in English and Spanish, this tale is told from a child’s point of view. A little girl whose grandfather has Alzheimer’s disease is confused and upset when he cannot remember her. Her mother tells her about Alzheimer’s and gives the girl a job—to be her grandfather’s memory and remind him about all the fun things they have done together.

Available from Raven Tree Press. Phone: 1-800-323-8270. Email: custsvc@deltapublishing.com . Hardcover $14.95.

Singing with Momma Lou (by Linda Jacobs Altman, 2002, 32 p.)

This book for children age 6–9 tells the story of 9-year-old Tamika and her grandmother, Momma Lou, who has Alzheimer’s disease. Every Sunday, Tamika visits Momma Lou in the nursing home. Tamika uses photographs, school yearbooks, movie ticket stubs, newspaper clippings, songs, and other mementos to help Momma Lou remember important times in her life and to learn about her grandmother’s life.

Available from online booksellers. Hardcover.

Still My Grandma (by Veronique Van den Abeele, 2007, 28 p.)

Recommended for ages 4–8, this illustrated story describes little Camille’s fun times with her grandmother. When her grandmother develops Alzheimer’s and does odd things, Camille learns about the disease and finds ways to continue their special relationship.

Available from Eerdmans Books for Young Readers. Phone: 1-616-459-4591. Email: customerservice@eerdmans.com . Hardcover $16.

Striped Shirts and Flowered Pants: A Story About Alzheimer’s Disease for Young Children (by Barbara Schnurbush, 2006, 32 p.)

In this picture book for children ages 4–8, Libby and Nana love to read stories and feed birds together. But Libby notices that Nana is forgetting the words in books, mixing up the names of birds, and wearing clothes that don’t match. When Libby’s parents tell her about Alzheimer’s disease, she begins to understand what is happening to Nana. With their reassurance and help, she finds ways to be with Nana and still do the things they love.

Published by Magination Press. Phone: 1-800-374-2721. Email: magination@apa.org . Hardcover $14.95.

The Voice of the Climbing Rose: A Tribute to Caregivers (by Christopher Perry, 2004, 32 p.)

This illustrated storybook is designed to help children understand what is happening to loved ones with Alzheimer’s. It tells the story of a mother who plants a rose bush the day her daughter was born. As time passes, the woman watches both her daughter and the rose bush grow, but she eventually develops Alzheimer’s and forgets many things, including the rose bush and her own daughter. The daughter still loves and cares for her, as her mother cared for the once-fallen bush long ago. The book comes with a CD containing a lullaby.

Available from online booksellers. Paperback from $1.25.

What’s Happening to Grandpa? (by Maria Shriver, 2004, 48 p.)

This book tells the story of Kate, a young girl whose grandfather has Alzheimer’s disease. Grandpa has always been the best storyteller Kate has ever known, but lately he repeats himself, becomes easily frustrated, and even forgets Kate’s name. When Kate’s mother explains that Grandpa has Alzheimer’s, Kate finds a way to cherish his life and memories. For children age 3–6.

Available from online booksellers. Hardcover $15.99.

When My Grammy Forgets, I Remember: A Child’s Perspective on Dementia (by Toby Haberkorn, 2015, 38 p.)

This picture book, told from a young girl’s perspective, reveals the closeness and love between a grandmother and granddaughter as they spent time together. The girl notices changes in her Grammy’s behavior, like how Grammy can’t read to her anymore. The girl’s mother tells her that “Grammy’s brain is not working properly” but assures her that Grammy still loves her. The refrain “My Grammy hugs me tight” becomes “I hug my Grammy tight.”

Available from online booksellers. Paperback $12.95.

Why Did Grandma Put Her Underwear in the Refrigerator? An Explanation of Alzheimer’s Disease for Children (by Max Wallack and Carolyn Given, 2013, 40 p.)

Seven-year-old Julie explains Alzheimer’s to young readers in terms they can understand. Told from a second-grader’s point of view, this illustrated book can help children cope with a relative’s gradual memory loss and new behaviors and learn how to care for a relative in their own way.

Available from online booksellers. Paperback $11.53.

A Young Man’s Dance (by Laurie Knowlton, 2006, 32 p.)

This illustrated children’s book tells the story of a young boy whose Grandma loved to dance with her grandson while cookies baked in her oven. Now she lives in a nursing home, where she sits in a wheelchair and doesn’t remember the cookies or her grandson’s name. Seeing his grandmother like this is hard for the boy. One day, when a band plays at the nursing home, the grandson finds a way to relive dancing with Grandma.

Available from online booksellers. Hardcover $14.26.

For Teenagers

AFA Teens

This website seeks to raise awareness of Alzheimer’s and engage teens in the cause. For teens with family members affected by the disease, AFA Teens offers an online community with support from experts and the chance to share experiences and connect with each other through a bulletin board and blog. Other features include an e-newsletter and calendar of events.

Published by the Alzheimer’s Foundation of America. Phone: 1-866-AFA-8484. Email: info@alzfdn.org . Free online access.

Brain Basics: Know Your Brain

This web page explains the parts of the human brain, functions they control, and how they work, with accompanying figures. It describes the brain’s communications system and lists major neurological disorders that alter the brain’s ability to function properly.

Published by the National Institute of Neurological Disorders and Stroke. www.ninds.nih.gov. Free online access.

Curveball: The Year I Lost My Grip (by Jordan Sonnenblick, 2012, 304 p.)

After Peter’s hopes to join his new high school’s baseball team are dashed, he turns to an old hobby, photography. Taught by his grandfather, a professional photographer, Peter spends more and more time with his grandfather and a girl in photography class at school. Grandpa’s forgetfulness and new habits puzzle Peter until he learns about Alzheimer’s. This novel explores friendship, romance, family, and tragedy. Age 12 and up.

Published by Scholastic Press. Phone: 1-800-724-6527. Hardcover $12.59; paperback $5.59.

Pop (by Gordon Korman, 2011, 272 p.)

New-boy-in-town Marcus joins the school football team and meets Charlie, a middle-aged man who turns out to be retired NFL linebacker Charlie Popovich, “the king of the pop.” Marcus’s rival teammate Troy turns out to be Charlie’s son. This book weaves a tale of intergenerational friendship as Marcus learns that Charlie has early-onset Alzheimer’s—a fact that Charlie’s family desperately wants to hide but that is increasingly hard to ignore.

Published by HarperCollins/Balzer + Bray. Phone: 1-212-207-7000. Email: orders@harpercollins.com . Paperback $9.99.

Trudy (by Jessica Lee Anderson, 2005, 192 p.)

In this novel for teens, Trudy, who is in middle school, has older parents who are sometimes mistaken to be her grandparents. And if that isn’t enough, math class isn’t going well, and her best friend Ashley has ditched her for a new crowd. Then Trudy finds a new best friend and has her first crush on a boy. Just when things are starting to look up at school, Pop is diagnosed with Alzheimer’s disease, and Trudy and her mother face some tough decisions.

Available from Milkweed Editions. Phone: 1-800-520-6455. Hardcover $6.95

For All Children

About My Grandfather, About My Grandmother (2007, 6:30)

This video features young children and teens from two different families talking about what it’s like to experience a grandparent’s dementia. They discuss how they learned about Alzheimer’s, their feelings during situations that arose, and how they responded.

Produced by the Alzheimer’s Society. Free online access.

Alzheimer’s Disease (2011)

This short website article for children describes Alzheimer’s disease, what happens to the brain, symptoms and diagnosis, and treatment. It also discusses how children might react to a loved one with Alzheimer’s and simple ways to show caring and love.

Published by the Nemours Center for Children’s Health Media. Free online access.

Grandpa, Do You Know Who I Am? (2009, 30:48)

This film is part of The Alzheimer’s Project, which looks at groundbreaking scientific discoveries and seeks to increase public understanding of Alzheimer’s research and caregiving. Narrated by Maria Shriver, it tells five stories of children ages 6–15 whose grandparents have Alzheimer’s. It shows how dementia can affect children and how children can relate to older family members with memory problems. An accompanying discussion guide (PDF, 318K) is designed to help start family and community conversations between kids and adults about the film and about Alzheimer’s disease.

Produced by HBO Documentary Films. Free online access.

Information About Dementia for Young People (PDF, 152K) (2012, 2 p.)

This fact sheet provides basic information about dementia for children and adolescents. The first part provides a general overview of dementia, its symptoms, and diagnosis. The second part explains how dementia can affect children and grandchildren, how kids can help people with dementia, and how kids can handle their feelings about dementia. Includes a list of downloadable publications.

Available from Alzheimer’s Australia. Free online access.

Kids & Teens

This web page links to several videos, fact sheets, and other materials to help young people understand Alzheimer’s disease, how it affects the brain, and how to cope with a family member’s diagnosis. It links to the Alzheimer’s Association’s “Brain Tour” and related websites, as well as resources for parents to help them talk to children about Alzheimer’s. Includes videos for kids and teens.

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

For Parents and Adults Who Work with Children

After a Diagnosis of Alzheimer’s: Libby’s Story (2011, 3:49)

In this video, Libby explains how she told her grandson about her diagnosis of Alzheimer’s disease and “made memories” with him.

Produced by the Alzheimer’s Association. Free online access.

Explaining Dementia to Children and Young People (2013, 8 p.)

Finding out that someone close to you has dementia, and coping with the ongoing illness, can be distressing for anyone, including children and young people. This fact sheet explains how children and teens can be affected and suggests ways parents can talk with their children about dementia and help them feel secure and involved.

Published by the Alzheimer’s Society. Free online access.

Helping Kids Understand Alzheimer’s Disease (2017)

When a family member has Alzheimer’s, it affects everyone in the family, including children and grandchildren. This article suggests ways to help children and teenagers cope with their feelings and find ways to spend time with the person with Alzheimer’s.

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

Parents’ Guide: Helping Children and Teens Understand Alzheimer’s Disease (PDF, 1.6M) (2013, 11 p.)

This brochure is intended to help parents talk to their children and teenagers so they can understand what’s happening to a relative with Alzheimer’s disease. It outlines the emotions children and teens may feel and how they might express them, as well as questions they may ask. The brochure also suggests activities kids can do with the person with Alzheimer’s and other ways parents can help kids cope.

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

When the Brain Fails to Do Its Work: Dementia Education for High School Students (2010)

This four-part dementia education curriculum for high school students includes an overview of dementia, information about caregiving, community resources in Michigan, and career paths and volunteer opportunities for students interested in working with older adults. The curriculum addresses many issues that teens with Alzheimer’s in the family may face and suggests activities and coping strategies.

Available from Northern Michigan University. Phone: 1-906-227-1000. Free online access.

Citation

https://www.nia.nih.gov/health/resources-children-and-teens-about-alzheimers-disease

National Institutes of Health

 

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

 

Alzheimer’s Disease: Anticipating End-of-Life Needs

(Mayo Clinic) As an Alzheimer’s caregiver, you might be your loved one’s most powerful voice. Make decisions that ensure dignity and comfort for your loved one.

In the early stages of Alzheimer’s disease, caregivers often focus on keeping loved ones safe and comfortable. As the disease progresses, however, you might face difficult end-of-life questions. When is it time to choose comfort care over lifesaving care for your loved one? When does medical care merely prolong a person’s dying? Here’s help considering these and other end-of-life questions.

Create Advance Directives

Advance directives are written instructions regarding your loved one’s preferences for medical care at the end of life. Ideally, discuss these preferences in the early stages of the disease with your loved one. Later, make sure copies of advance directives are included in your loved one’s medical charts. This is important if your loved one moves to a nursing home or other facility for long-term care or needs care in a hospital or emergency room. The advance directives will help the staff know what is — and isn’t — to be done in medical emergencies.

Focus on Comfort, Not Life Extension

As Alzheimer’s progresses, your loved one might not be able to communicate that he or she is in pain. Look for clues, such as a sudden increase in disruptive behavior or trouble sleeping. Physical signs might include sores, swelling, and feverish or pale skin. Speak to the medical team about adjusting your loved one’s treatment plan to ensure his or her comfort.

Eventually, you might need to weigh your loved one’s comfort against the benefits of prolonged life. In some cases, efforts to prolong life — such as dialysis, tube feeding and antibiotics to treat bacterial infections — might result in unnecessary suffering for people who could otherwise reach the end of life in relative comfort and peace.

Consider Hospice or Palliative Care

Hospice care focuses on pain management and comfort care at the end of life. Hospice care is typically reserved for people who have less than six months to live. Because this time frame can be difficult to predict in end-stage Alzheimer’s, hospice care is generally considered appropriate when a person who has end-stage Alzheimer’s:

  • Has lost the ability to communicate
  • Can no longer walk
  • Is experiencing urinary and fecal incontinence
  • Has at least one dementia-related medical complication, such as aspiration pneumonia, infection or weight loss

Hospice care can be provided anywhere, including a nursing home. If your loved one lives longer than six months after starting hospice care, the benefit can be extended. Likewise, you can choose to stop hospice care at any time.

Palliative care — which aims to improve quality of life for people who have advanced illnesses — also might be appropriate. Unlike hospice care, palliative care is available at any time during a serious or life-threatening illness. It’s offered in conjunction with other medical treatment and is meant to help ease symptoms, relieve pain, address spiritual and psychological concerns, and maintain dignity and comfort.

Connect Through the Senses

Even if your loved one doesn’t recognize you or can’t communicate verbally, you can still show reassurance and love. To maintain a connection, use your loved one’s senses:

  • Touch. Hold your loved one’s hand. Brush his or her hair. Gently massage your loved one’s hands, legs or feet.
  • Smell. The scent of a favorite perfume, flower or food might be comforting.
  • Sight. Show your loved one a video with scenes of nature and soft, calming sounds. Or take him or her to look at a garden or watch the birds.
  • Hearing. Read aloud, even if your loved one can’t understand the words. The tone and rhythm of your voice might be soothing.

Dying with Dignity

Helping someone who has Alzheimer’s through the last years of life is a difficult journey. As the disease progresses, you’ll make more decisions for your loved one. Among the most profound are decisions that ensure respect, dignity and physical comfort until the end of life.

Citation

http://www.mayoclinic.org/healthy-lifestyle/caregivers/in-depth/alzheimers/art-20044065?pg=1

© 1998-2017 Mayo Foundation for Medical Education and Research (MFMER). All rights reserved.

 

19 Free Services for Seniors or Their Caregivers

(AgingCare.com with Tony Rovere) Most seniors these days are living on limited incomes from sources that may include Social Security, a small pension or maybe some other form of government assistance. With few resources at their disposal, finding services for free or discounted prices is vital.

There are likely many of these types of services available through your local Office for the Aging (the name of this government agency may be different in your local area, i.e. Division of Senior Services) or local charities such as Lions Club or Meals-on-Wheels, or on the Internet through sites like ElderCare.gov.

However, in my opinion, the most rewarding of these freebies for seniors and their caregivers – things like free hearing aids and free dentures – will be more difficult to come by. From my experiences as a caregiver, I have compiled a list of these types of services and provided a roadmap and examples for how to find them.

1. Benefit Counseling

How many times have you, either as a senior or as a caregiver, wrestled with trying to figure out what type of help was available to you? There is free counseling available through your local Office for the Aging that can provide this type of assistance and point you in the right direction to receiving the help you need.

You can get answers regarding health insurance, food stamps and other services through these counselors.

2. Adult Day Care

Adult day care centers can be run by a government entity, or through a local charity or house of worship. The purpose of these senior centers is to provide a safe place to socialize and have a hot meal in a protected setting. These adult day care centers are ideal for seniors who cannot remain alone, but are not in need of the care that a nursing home provides.

If you go through your local Office for the Aging, they will probably be able to direct you to such a day care center, let you know if there is a charge for the facility and what the eligibility requirements are.

As for the fees associated with these facilities, if the facility does in fact charge a fee they are normally quite nominal and are just there to help the center cover its own costs for meals and operating costs like utilities.

As for the eligibility requirements, that will depend upon the capabilities of the staff at each individual facility. As an example, some adult day care centers will only accept those who are continent because they will not have the supplies to change adult diapers. Other facilities may require a certain amount of mobility for those attending (i.e. they are able to get out of a wheelchair on their own or with minor assistance). It is really ‘hit or miss’ because each facility will have their own requirements.

When initially contacting the Office for the Aging or the local charity, give them as much information upfront regarding both the fees (if you are only looking for a free facility) and the physical condition of the applicant. This way they can act as a filter to point you in the right direction.

3. Dentists That Accept Medicaid

Due to the problems of billing and getting paid by the government, there aren’t many dentists that accept Medicaid, but a few do. This means that a senior with no dental insurance may still be able to get the dental care needed…you just might have to travel to get it.

To find a dentist in your state that accepts Medicaid, contact your state Department of Health, but keep in mind that you may have to travel out of your way to get these services. For example, in my home state of New York, the state Department of Health website lists about 40 dentists that accept Medicaid. That’s not a great number for a state with a population of 19,500,000. On Long Island, where I live, there are only two.

4. Free Dentures

As incredible as it may seem, it is possible for low-income seniors to receive a free set of dentures. In addition to calling your Office for the Aging to see if they know of a source, here are two additional places to look into:

  • Your State Dental Association: here you will be able to access free or low-cost dental programs. As an example, one of my customers contacted the Ohio Dental Association and was then directed to Dental Options (in Ohio). She discovered her mother was eligible and will soon be getting the help she needs. While these services will vary based on your location, the place to start is with your state dental association.
  • Dental Colleges: while not free, if there is a local dental college in your area you could get a substantial discount on dental care.

5. Elderly Pharmaceutical Assistance Program (EPIC)

EPIC is the name of the State Pharmaceutical Assistance Program in New York. New York is one of the 23 states that have such a program (the other 27 canceled their programs after the Federal government instituted Medicare Part D). If you live in Colorado, Connecticut, Delaware, Idaho, Illinois, Indiana, Massachusetts, Maryland, Maine, Missouri, Montana, North Carolina, New Jersey, Nevada, New York, Pennsylvania, Rhode Island, Texas, the U.S. Virgin Islands, Virginia, Vermont, Washington State or Wisconsin, you have access to another means of assistance to obtain your prescription medications.

Income requirements vary from state to state, so you will have to check with your state administrators to determine your level of eligibility, but this can be a great way for seniors to save on their prescription drug costs.

6. Low Cost Prescription Drugs

Despite the advent of Medicare Part D, and certain state run assistance programs such as EPIC (outlined above), there are still many seniors that cannot afford their medications.

This is why most manufacturers of prescription drugs provide assistance for those who cannot afford their medications. A comprehensive list of these programs is provide by the Partnership for Prescription Assistance as well as the steps to follow to apply for assistance.

Another cost saving strategy is to make the switch to generic drugs.

As the Food and Drug Administration says:

Generic drugs are important options that allow greater access to health care for all Americans. They are copies of brand-name drugs and are the same as those brand name drugs in dosage form, safety, strength, route of administration, quality, performance characteristics and intended use.”

Generic drugs cost about 50%-80% less than their brand name equivalents, so it makes all the sense in the world to speak with your doctor about making the switch.

7. Family Caregiver Support Programs

These programs are often offered through the government, or volunteer organizations. Either way, as a caregiver, you can be provided with respite care by volunteers, as well as counseling and Support Groups to ensure your physical and emotional wellbeing. These services are designed to supplement, not replace, the efforts of the family in caring for a loved one.

8. Free Cell Phones or Discounted Phone Service

LifeLine is a federal government program for qualifying low-income consumers designed

“to ensure that all Americans have the opportunities and security that phone service brings, including being able to connect to jobs, family and emergency services.”

LifeLine assistance provides one free or discounted phone (either landline or wireless cell phone) per household. To qualify, seniors will likely have to be on some form of government assistance, such as:

  • Medicaid
  • Food Stamps
  • Supplemental Social Security
  • Temporary Assistance for Needy Families
  • Low Income Home Energy Assistance Program

Visit LifelineSupport.org to see if you qualify and to find participating companies in your state.

I was able to get my mother a free cell phone within five days of her being approved for Medicaid, after providing a picture of my mother’s Medicaid award letter (yes, I know it is shocking for the government to move that quickly). The only drawback to the program is the type of phone that you are sent. My mother can use it but it has smaller buttons that can make it confusing. I would prefer for her to have a larger handset with larger buttons, but this is working for the moment.

9. Free Phone for Hearing Impaired

A new service that is (at least temporarily) being funded by the FCC, called CaptionCall, provides free phones to those with medically recognized hearing loss.

The way that this phone works is simple. A screen on the phone instantly takes the words being spoken and puts them onto a screen on the phone so that hearing impaired individuals can read what is being said.

You can learn more at CaptionCall.com/Caregiver (and click on Promotions) for more information.

10. Supplemental Nutritional Assistance Program (SNAP)

This used to be called Food Stamps, but is now known as the Supplemental Nutritional Assistance Program (SNAP). You can apply through your state Office for the Aging, or Elder Affairs Department.

Each state has slightly different requirements based upon income, but what I have found is that most states have a website (www.mybenefits.ny.gov in my home state of New York) where you can set up an online account and, based upon your age, zip code, income and residence status, you are then directed to all of the benefits that you are eligible for.

Once you are approved, the maximum monthly benefit depends upon the size of your family, from $200 all the way up to $1,500.

11. Other Free Food Services

In addition to programs such as SNAP, there are many nutrition programs, offered either by local charities or local governments that can provide seniors with a nutritious meal (typically lunch) and the opportunity to socialize.

Check with your local Office for the Aging to see what programs are available in your area. In my county, there are 33 such nutrition sites that seniors can attend and, in some cases, transportation is provided.

There are also websites that have listings of local food banks where qualifying individuals can receive free food. The best food bank search engine is at Feedingamerica.org. Simply plug in your state and a listing of locations and the types of services offered at each food bank will pop up.

12. Free Hearing Aids

Buying a new hearing aid can run into the thousands of dollars, so it’s no wonder that seniors are hard pressed to pay for these devices. But I have found that there are a few ways to obtain free hearing aids. Some will be new, and others may be used, but they will all be free.

First, try your local Lion’s Club. Most chapters either operate or know of a local hearing aid bank that can match needy seniors with recycled hearing aids.

Another approach is to seek out clinical trials of new hearing aids. Contact hearing aid manufacturers and see if you can volunteer for a trial. When the trial is over, you typically get to keep the hearing aid. I recently saw a commercial from one hearing aid manufacturer that was advertising for people to participate in trials, so they are open to this idea.

You will have to medically qualify for the trial and you may have to contact several manufacturers until you find one that works for you. You may also get put on a waiting list. Regardless, this can be a powerful way for very low income seniors to receive a free hearing aid.

13. Free Legal Help

When my mother had her heart attack and I started the Medicaid application process, I quickly realized that there would not be any money to pay our mounting bills. So I called my local Office for the Aging and they put me in touch with a local law school that operated a Senior Law Center for low income seniors like Mom.

They wrote a letter to the creditors on my behalf asking for the debts to be forgiven. With this letter I attached a letter from the nursing home detailing Mom’s prognosis. That was 14 months ago, and I haven’t heard from the creditors since, so I guess that ‘no news is good news.’ I did receive one confirmation letter, from Wal-Mart, that the debts were forgiven. The others have not contacted me yet, so I am hopeful that they’ve written the debts off as bad debt.

These types of law centers won’t represent you in a large scale, but they can be invaluable in drafting a simple will, certifying a POA or health care proxy, or drafting a letter to creditors.

If your Office for the Aging is unaware of a local resource for such help, another place to look would be the Lion’s Club. Many of the members of the Lion’s are attorneys and local business leaders who may be able to help you find a pro bono attorney to handle something like this.

14. Free Medical Alert System

We have all seen the television commercial with the elderly woman in the bathroom saying, “Help, I’ve fallen and I can’t get up!” That’s what a medic alert system is for. It is a waterproof pendant that is worn around the neck or wrist, that works in conjunction with a wireless phone attachment. In an emergency, the wearer presses the button to be connected with the monitoring service and speaks into the pendant.

The actual system is totally free, even the shipping. The monitoring service does have to be paid for, but that is normally around $30 a month.

One thing I would advise you to consider when choosing a medic alert company. Make sure that the company you choose does NOT outsource its central station monitoring service. When your loved one hits that button, you want a trained, competent professional who can calmly contact emergency services and stay on the line with your parent until help arrives.

There are many medical alert products out there, such as, LifeStation and Rescue Alert, that offer this type of service.

15. Free Walkers or Rollators

A walker will run you around $40 (rollators are a little more expensive). That can be a lot of money for a cash-strapped senior. If you are looking for a discounted or free walker, here are places you should start your search:

a) Thrift stores such as Goodwill, which operates outlet stores throughout the country and has very reasonable prices

b) Hospitals and nursing homes may periodically dispose of reliable, used equipment that may be ideal for you.

16. Home Energy Assistance Program (HEAP)

Through your local or state Office for the Aging, you can apply for assistance either in the form of weather upgrades to your residence – such as added insulation in the attic to improve the energy efficiency of your home (this is known as the Weatherization Assistance Program) – as well as direct cash assistance based upon your income level.

One not widely known fact about HEAP is that it is available to both homeowners and renters, making it more widely accessible for low-income seniors.

17. Ombudsman Services

For caregivers of nursing home patients, the state ombudsman’s office is there to address issues with the care of their loved ones. You can think of the ombudsman as similar to a union rep. They will investigate complaints on your behalf to insure that nursing home residents are being treated fairly.

I previously wrote about my own experience with nursing home neglect against my mother and how I brought in the state ombudsman to investigate the issue.

If you feel there is an issue of neglect or abuse of a nursing home resident, getting the contact information is easy. This information must be prominently displayed in the lobby of all nursing homes, along with the website and phone number to call for help.

18. Residential Repair Services

Need some minor work done around the house, but can’t afford the labor? Many Offices of the Aging run a residential repair service where seniors can have minor work done to their home or rental at no labor cost.

NOTE: You will have to pay for supplies, but the labor is free from the volunteers.

19. Silver Alert Program

Caregivers of seniors with dementia are often concerned about a loved one getting lost while wandering – especially if they are driving with dementia. There are many ways to combat this. One way is through a Silver Alert program, which (as defined on Wikipedia)

“is a public notification system in the United States to broadcast information about missing persons – especially seniors with Alzheimer’s Disease, dementia, or other mental disabilities – in order to aid in their return.”

Silver Alert and similar programs vary greatly by state. The way the Silver Alert program works in my local area is as follows:

The caregiver will contact the local police department and fill out a form identifying the senior, giving a physical description, as well as any medical information you wish to disclose.

Your parent will then be issued a Silver Alert bracelet that will have a unique ID number and instructions for anyone who locates them to call a police non-emergency number. This way they can be safely returned home without compromising any personal information on the part of the senior or caregiver.

Check with your local Police Department for more information.

I have used many of these services to assist me in my role as a caregiver and hope that this list of free or discounted services is useful to you and your family as well.

~ Tony Rovere, AgingCare.com

Do you know of other free services for seniors that we can add to the list?

Citation

https://www.agingcare.com/Articles/free-services-for-seniors-or-caregivers-156443.htm

Tony Rovere became involved with seniors and caregiving after his mother’s heart attack forced him to navigate the government bureaucracy that comes with caregiving. His website, StuffSeniorsNeed.com, is a resource for seniors and caregivers who can benefit from his personal experience as a caregiver.

©2016 AgingCare, LLC. All rights reserved.

 

Traveling with Dementia

(Alzheimer’s Association) If a person has Alzheimer’s or other dementia, it doesn’t mean he or she can no longer participate in meaningful activities such as travel; but it does require planning to ensure safety and enjoyment for everyone.

Deciding to Travel

Whether taking a short trip to see friends and family or traveling a far distance for vacation, it’s important to consider the difficulties and benefits of travel for a person with dementia. In the early stages of dementia, a person may still enjoy traveling. As the disease progresses, travel may become too overwhelming.

When you take into account the needs, abilities, safety and preferences of the person with dementia, what’s the best mode of travel? Consider the following:

  • Go with the option that provides the most comfort and the least anxiety.
  • Stick with the familiar. Travel to known destinations that involve as few changes in daily routine as possible. Try to visit places that were familiar before the onset of dementia.
  • Keep in mind that there may come a time when traveling is too disorienting or stressful for the person with dementia.

Tips for a Safe Trip

  • Changes in environment can trigger wandering. Even for a person in the early stages, new environments may be more difficult to navigate. Keep the person safe by taking precautions, such as enrolling in MedicAlert® + Alzheimer’s Association Safe Return®Comfort Zone® or Comfort Zone Check-In®.
  • Have a bag of essentials with you at all times that includes medications, your travel itinerary, a comfortable change of clothes, water, snacks and activities.
  • Pack necessary medications, up-to-date medical information, a list of emergency contacts and photocopies of important legal documents.
  • Create an itinerary that includes details about each destination. Give copies to emergency contacts at home. Keep a copy of your itinerary with you at all times.
  • If you will be staying in a hotel, inform the staff ahead of time of your specific needs so they can be prepared to assist you.
  • Travel during the time of day that is best for the person with dementia.

If you will be at a location for an extended period of time, consider contacting the local Alzheimer’s Association for resources and support. Find a chapter anywhere in the United States.

Documents to Take with You When Traveling

  • Doctors’ names and contact information
  • A list of current medications and dosages
  • Phone numbers and addresses of the local police and fire departments, hospitals and poison control
  • A list of food or drug allergies
  • Copies of legal papers (living will, advanced directives, power of attorney, etc.)
  • Names and contact information of friends and family members to call in case of an emergency
  • Insurance information (policy number, member name)

Air Travel

Traveling in airports requires plenty of focus and attention. At times, the level of activity can be distracting, overwhelming or difficult to understand for someone with dementia. If you are traveling by plane, keep the following in mind:

  • Avoid scheduling flights that require tight connections. Ask about airport escort services that can help you get from place to place.
  • Inform the airline and airport medical service department ahead of time of your needs to make sure they can help you. Most airlines will work with you to accommodate special needs.
  • If appropriate, tell airport employees, screeners and in-flight crew members that you are traveling with someone who has dementia.
  • Even if walking is not difficult, consider requesting a wheelchair so that an airport employee is assigned to help you get from place to place.
  • Allow for extra time.

More Resources

Citation

http://www.alz.org/care/alzheimers-dementia-and-traveling.asp

Copyright © 2017  Alzheimer’s Association®. All rights reserved.

 

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

 

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