Caregiving

More than 34 million Americans in the U.S. have provided unpaid care to an adult age 50 or older, sometime in the last 12 months. Those family caregivers provide important societal and financial contributions toward the health and well-being of those they are caring for. Learn about caring for someone with Alzheimer's disease, organize critical caregiving information with our Personal Health Organizer, and visit the National Alliance for Caregiving to learn more about caregiving generally.

 

Press Room

A New Online Resource for Those Living with Heart Valve Disease

Author: Noel Lloyd

Date: June 1st, 2015

Website Offers Educational Resources, Personal Stories


This Grandparents Day Remember to Keep Medicine Up and Away and Out of Sight of Grandkids

Type: Alliance for Aging Research

Author: Noel Lloyd

Date: September 4th, 2014

While grandparents place a top priority on their grandchildren’s safety, an often overlooked danger lurks within easy reach of children in their care: unsecured medications.


"Pocket Film" Aims to Save Lives of Older Americans through Early Recognition of Sepsis

Date: August 2nd, 2013

Alliance for Aging Research releases short film that teaches the signs of sepsis and the importance of acting quickly to save patients and loved ones from this deadly disease.


New Tools Boost Alzheimer's Awareness

Date: March 12th, 2008

Downloadable "pocket" films help increase public understanding of a 21st century epidemic.


Alliance Unveils Resource for Family Caregivers of Alzheimer's Patients

Date: November 29th, 2006

November is National Alzheimer's Disease Awareness Month.


Caregivers Can Impact Disease Outcomes for Colon Cancer Patients

Date: November 14th, 2005

Actor Miguel Ferrer and the Alliance for Aging Research join forces to educate about the important role of caregivers.

Publications


Public Comments

Letter to Ayotte, Bennet, Black, and Grisham on Assisting Caregivers Today (ACT) Caucus

Author: Various

Date: 2015

The Alliance for Aging Research joined other organizations in this letter commending Sen. Kelly Ayotte,  Rep. Diane Black, Rep. Michael Bennet, and Rep. Michelle Lujan Grisham for  their leadership in establishing and co-chairing the bipartisan, bicameral Assisting Caregivers Today (ACT) Caucus.






Brochure

Living with Alzheimer's: A Personal Health Organizer

Date: 2010

This 3-ring, hardcover binder includes the necesssary tools you need to sort through all of the information that comes your way.  It is designed to help the person who has just been diagnosed, but many of the worksheets can be used together with familiy members or by caregivers of those who are in later stages of the disease.

Since no one experiences Alzheimer's in the same way, your binder can be organized in a way that best fits your needs.

The binder includes a brochure and worksheets





Workshop Kit

Alzheimer's Disease: Helping Yourself Help a Loved One—Workshop Kit

Date: 2008

This workshop kit is designed for community leaders in order to provide all of the tools necessary to conduct a workshop/seminar for family caregivers.  It contains:

  • A leaders' guide with tips and instructions on conducting a workshop, as well as the latest information on treatments and research
  • A caregiver workbook that helps caregivers develop a personalized action plan to take better care of their loved ones and themselves
  • A caregiver brochure that provides some of the many resources that will help caregivers form a network of support and take care of themselves
  • A DVD that shares the story of a family dealing with Alzheimer's



Brochure

Alzheimer's Disease: Helping Yourself Help a Loved One—Caregiver Brochure

Date: 2008

This brochure provides some of the many resources that will help you form a network of support and take care of yourself, while taking care of your loved one.  The brochure is also availabe in Spanish.

You may also want to download this caregiver workbook that helps caregivers develop a personalized action plan to take better care of their loved ones and themselves.




Brochure

Alzheimer's Disease: Helping Yourself Help a Loved One--Caregiver Workbook

Date: 2008

This workbook s an interactive resource that helps caregivers develop a personalized action plan to take better care of their loved ones and themselves. It includes worksheets on important issues such as making your home safe, preparing for a health care appointment, keeping a health journal, and dealing with financial planning.

The worksheets are useful tools for getting organized and keeping track of a lot of the information that comes with caring for someone with Alzheimer's disease. You can download and print out extra copies of these worksheets by clicking the links below:

You may also want to download this caregiver brochure which provides some of the many resources that will help you form a network of support and take care of yourself, while taking care of your loved one.



Fact Sheet

Alzheimer's Disease Workbook: Health Journal Worksheet

Date: 2008

It's useful to keep a health journal so you can ensure that your loved one's health care team is able to provide the best care possible. By keeping track of day-to-day health information that only you may observe, you can provide valuable information to your loved one's health care team. A journal also makes it easy to record information about Alzheimer's disease and other conditions your loved one may have, so you can make the most of your time at appointments and be sure not to forget anything.

To access other helpful worksheets, download Alzheimer's Disease: Helping Yourself Help a Loved One--Workbook.



Fact Sheet

Alzheimer's Disease: Medication List Worksheet

Date: 2008

Your loved one may take many medications for Alzheimer's disease and other health conditions. Keeping track of them helps the health care team make sure the medications are working well together, and find possible drug interactions. You can use this medication list worksheet to keep all of the information about your loved one's medications in one place.

To access other helpful worksheets, download Alzheimer's Disease: Helping Yourself Help a Loved One--Workbook.



Fact Sheet

Alzheimer's Disease Workbook: Health Care Appointment Worksheet

Date: 2008

Taking your loved one to health care appointments may become difficult at times. If you prepare for appointments by writing down questions and scheduling the appointments at a good time for your loved one, you can make sure that the appointment goes as smoothly as possible. Use this worksheet to record information about the appointment so that it's all in one place.

To access other helpful worksheets, download Alzheimer's Disease: Helping Yourself Help a Loved One--Workbook.



Fact Sheet

Alzheimer's Disease: Clinical Trial Worksheet

Date: 2008

While there is no cure for Alzheimer's disease, there are drugs that may improve or stabilize symptoms. New drugs are also under development that offer hope for Alzheimer's patients, and clinical trials test whether these treatments are safe and effective. If you haven't already, you may want to consider enrolling your loved one in a clinical trial. This worksheet is a log that can help you keep track of clinical trials that you find.

To access other helpful worksheets, download Alzheimer's Disease: Helping Yourself Help a Loved One--Workbook.



Fact Sheet

Alzheimer's Disease Workbook: Financial & Legal Checklist

Date: 2008

By starting the financial and legal planning process now, you can make sure that your loved one is cared for as their disease progresses. It's important for you to start this process early, because Alzheimer's disease will gradually make it harder for your loved one to participate in planning. Use this checklist to get you started.

To access other helpful worksheets, download Alzheimer's Disease: Helping Yourself Help a Loved One--Workbook.



Fact Sheet

Alzheimer's Disease Workbook: Home Safety Checklist

Date: 2008

Alzheimer's disease progresses differently in everyone, but eventually it will affect your loved one's independence. The typical home environment may become unfamiliar and dangerous, but there are steps you can take to make the home less stressful. Use this checklist to make sure that your loved one's residence is safe.

To access other helpful worksheets, download Alzheimer's Disease: Helping Yourself Help a Loved One--Workbook.



Fact Sheet

Alzheimer's Disease Workbook: Personal Schedule Worksheet

Date: 2008

As Alzheimer's disease progresses, your loved one will need more and more care. While you may feel that you don't have time to think about yourself, it is important to remember your own health and well-being. By exercising, thinking about your health, and giving yourself time to relax, you will stay healthier and be able to spend more time with your loved one. Use this log to keep track of health care appointments, your exercise schedule, social engagements, etc.

To access other helpful worksheets, download Alzheimer's Disease: Helping Yourself Help a Loved One--Workbook.



Survey

Colon Cancer: Caring for the Aging--Key Survey Findings

Author: Harris Interactive

Date: 2005

The Alliance commissioned a survey, conducted by Harris Interactive, that interviewed oncologists on the importance of caregivers for elderly colon cancer patients. 77% of physicians interviewed agreed that colon cancer patients 65 and older experience better disease outcomes when a caregiver is involved because of better communication. 81% also said that they depend on caregivers at least somewhat, and some a great deal, to act as an intermediary between them and the elderly patients. 100% fell the caregiver is part of a team involved in the patient's disease management.

The physicians felt that the primary roles of the caregivers are to provide emotional support, participate in doctor's visits and in disease management decisions, and to provide transportation to and from doctor's appointments. Unfortunately, only around three out of five colon cancer patients age 65 and older have the support of a caregiver.



Survey

Colon Cancer: Caring for the Aging

Date: 2005

Colon cancer is the third most commonly diagnosed cancer in the United States and will kill more than 50,000 people this year. A major risk factor for colon cancer is age, with more than 90% of cases occurring in people 50 years and older. Unfortunately, clinical evidence suggests that colon cancer patients 65 and older are not always getting the best disease management. However, a recent survey commissioned by the Alliance for Aging Research shows that caregivers play an important role in disease management and can have a major positive impact on disease outcomes.

The survey, conducted by Harris Interactive, interviewed oncologists on the importance of caregivers for elderly colon cancer patients. 77% of physicians interviewed agree that colon cancer patients 65 and older experience better disease outcomes when a caregiver is involved because of better communication. 81% also said that they depend on caregivers at least somewhat, and some a great deal, to act as an intermediary between them and the elderly patients. 100% feel the caregiver is part of a team involved in the patient's disease management. The physicians felt that the primary roles of the caregivers are to provide emotional support, participate in doctor's visits and in disease management decisions, and to provide transportation to and from doctor's appointments. Unfortunately, only around 3 out of 5 colon cancer patients 65 and older have the support of a caregiver.

Over 100 oncologists were interviewed, all of whom practice in the United States, treat at least 10 colorectal cancer patients per month, and have been practicing between 3 and 30 years. The survey included questions on how many patients have caregivers, who those caregivers are, their importance in disease management, their primary roles, and their participation in communication and treatment options.

 

Blog

Alliance President and CEO Sue Peschin Featured on Agewyz Podcast

Author: Breanna Bishop

Date: August 4th, 2016

Alliance CEO and President Sue Peschin spoke with Agewyz's Jana Panarites about the elders in her family who continue to inspire her and how the Alliance is working to advocate for older Americans and their caregivers.


We Are Family: Alzheimer's Caregivers and the Role of Community

Author: Noel Lloyd

Date: June 16th, 2016

Jeanie Harris and Sharon R. Melancon had their lives changed when their 91-year-old mom, Peggy, was diagnosed with Alzheimer's disease. Here is their story of how they endured the heartache of losing their mom, found the support in the love of family, and started a community to connect their fellow Alzheimer's caregivers.


McKnight's Features Guest Column about HAIs by Alliance's Peschin

Author: Noel Lloyd

Date: January 12th, 2016

Alliance President and CEO Susan Peschin, MHS, wrote a guest column for McKnight's Long-Term Care News about how the Centers for Medicare & Medicaid Services could better improve prevention of healthcare-associated infections in U.S. nursing homes, skilled nursing facilities, and assisted living facilities. 

 


Recognizing Family Caregivers Everywhere

Author: Noel Lloyd

Date: November 18th, 2015

During November we celebrate National Family Caregivers Month to honor family caregivers. Every day millions of Americans selflessly juggle busy schedules, jobs, and other responsibilities to provide essential care for their loved ones.


A Turn for the Worse

Author: Susan Peschin, MHS

Date: November 16th, 2015

As we kick off Get Smart about Antibiotics Week, some thoughts from our President and CEO Susan Peschin, MHS. 


Sen. Kelly Ayotte on the Value of NIH and Caregivers

Author: Noel Lloyd

Date: October 15th, 2015

U.S. Sen. Kelly Ayotte (NH) was the recipient of the Alliance's Distinguished Public Service Award.


Expert Jason Karlawish on Alzheimer's Disease, Bioethics, and the Future of Medicine

Author: Noel Lloyd

Date: September 18th, 2015

This is the first in our occasional series of stories about experts who research aging and the chronic diseases of later life.  For our debut entry, we introduce you to Jason Karlawish, M.D.


Superbugs and Seniors

Author: Cynthia Bens

Date: September 26th, 2014

Type: Blog

The Alliance for Aging Research was fortunate enough to host an amazing group of leaders from the fields of aging, infectious disease, health care and government to discuss the disproportionate impact of healthcare-associated infections (HAI) on older adults.


Revised Guidance on Medicare Hospice Benefit by CMS Deserves Praise

Author: Sue Peschin

Date: July 24th, 2014

Type: Blog

The Centers for Medicare & Medicaid Services issued a policy this past week that is really important for people with terminal conditions who receive the Medicare hospice benefit, and it deserved to be noted.    


Yes, I'm Asking you to Sign a Petition

Author: Sue Peschin

Date: January 9th, 2013

This Alzheimer's petition holds the White House’s and Congress’ feet to the fire on the goals of the first national Alzheimer’s plan—and I am asking you to sign it. 


IOM Recommends Boost to Mental Health and Substance Use Workforce

Author: Lindsay Clarke

Date: July 16th, 2012

Groups like the Alliance for Aging Research and the American Geriatrics Society (AGS) have long been calling attention to the looming crisis that we face with extreme current and projected shortages in our geriatric workforce. According to recent data from AGS there are currently only 7,029 certified geriatricians in the U.S. —half of what we currently need—and those numbers are in steep decline. Just imagine what these numbers will look like when our 65 and older population grows from 40.3 million now to 72.1 million in 2030.


A Doctor Who Prefers 'The Dark Side'

Author: Dan Perry

Date: October 21st, 2010

It seems Dr. Carl Elliott has let his instincts as a provocateur get the better of his perspective as a physician and healer. Promoting his book "White Coat, Black Hat: Adventures on the Dark Side of Medicine,” Dr. Elliott, a frequent contributor to The New Yorker and Atlantic Monthly, finds it deplorable that physicians who use drugs to relieve human misery have any actual contact with companies that research, develop and sell those medicines.


Organizing Your Health

Author: Guest Contributor

Date: August 10th, 2009

No matter your health status, a health organizer is a simple yet very helpful tool to keep track of important health information, so you don’t have to search high and low every time you or your health care provider needs to know information related to your health.


Preventing Injuries at Home

Author: Guest Contributor

Date: June 16th, 2009

Seniors age 85 and older are five times more likely to die in a fire than those younger mostly because of physical impairments. In addition, falls in the home can cause fractures, which can lead to loss of independence and health complications. During home safety month seniors and their caregivers should take steps to create a safer home environment.


Home Therapy: Improving and Extending the Lives of Older Adults

Author: Guest Contributor

Date: May 14th, 2009

Results from a new study show that a home-based occupational and physical therapy program extended the lives of those who received the therapy compared to those who did not.


Prevent Colorectal Cancer

Author: Guest Contributor

Date: February 27th, 2009

Colorectal cancer is one of the few cancers that can be prevented. Through a routine colonoscopy, physicians can remove pre-cancerous polyps which grow along the colon wall. Take the time during March, colorectal cancer awareness month, to learn more about risk factors and preventative measures for this disease.


Improving Access to Dental Care for Seniors

Author: Guest Contributor

Date: February 10th, 2009

The health and overall well-being of seniors can be improved with regular dental services. In many circumstances, ignoring oral care can lead to the development of oral diseases, tooth loss, infection, and if left untreated, death.


Gearing Up for the Silver Tsunami

Author: Guest Contributor

Date: December 5th, 2008

As the Silver Tsunami approaches, more and more families will be faced with the choice of staying at home and caring for their loved one or finding outside assistance. The uBOT-5 from the University of Massachusetts, Amherst may be available to help.


Silver Alerts for Missing Seniors

Author: Guest Contributor

Date: November 12th, 2008

One frightening reality Alzheimer's caregivers face is the potential for a loved one to wander and not be able to find their way home. A new idea has emerged--an Amber Alert system for the elderly, appropriately called Silver Alert.


Early Detection of Alzheimer's a High Priority for Consumers

Author: Lindsay Clarke

Date: October 29th, 2008

Voters for the American Express Members Project recently chose the Alzheimer’s Disease: Early Detection Matters campaign as the project they would most like to see funded. Close to 90,000 card members cast a vote—choosing from more than 1,000 potential projects. In the end, the winner was a campaign that will educate people about the importance of early diagnosis of Alzheimer’s—receiving $1.5 million in funding.


Easing the Burden for Alzheimer's Caregivers

Author: Guest Contributor

Date: May 9th, 2008

About 10 million of the almost 45 million caregivers in the United States care for individuals with Alzheimer’s disease. Most of these caregivers are not prepared for their new role, which takes a toll on their mental and physical health. Furthermore, Alzheimer’s disease is often called a “family disease,” because the daily stress of watching a loved one slowly decline affects the whole family.


New Documentary Helps to Debunk Stereotypes of Old Age

Author: Guest Contributor

Date: April 16th, 2008

Last Thursday morning during my usual routine of eating breakfast while listening to NPR’s “Morning Edition,” movie critic Kenneth Turan was discussing a new documentary, Young at Heart.

Newsletter

Alliance Annual Dinner Highlights Caregivers, Alzheimer’s Research

Date: December 7th, 2015

The Alliance's annual dinner, held this year on September 29, focused on the importance of caregivers and exciting breakthroughs in Alzheimer’s disease research.


Sepsis: Common & Deadly

Date: October 10th, 2013

Every year as many as one million Americans develop sepsis—a life-threatening medical condition that arises when the body initiates a powerful immune response against an infection. All types of infection can lead to sepsis—from an infected scrape, to pneumonia, to an infection at a surgical incision site, and no matter what the origin, sepsis can lead to death.


Navigating Health Care Transitions: Tools for Information Sharing

Date: July 1st, 2009

At some point in our lives, most of us will face an illness where we have to deal with many different health care professionals—often spread out in different locations and settings across the health care system. Our primary physician may refer us to a specialist, or we may have an emergency that sends us to the ER and later requires that we be admitted to the hospital or see our primary physician for follow-up. We may even have to move from the hospital to a rehabilitation or long-term care facility.


Helping Alzheimer's Caregivers Take Care of Their Own Health

Date: July 1st, 2008

The role of caregiver for a loved one diagnosed with Alzheimer’s disease can be a stressful one. Caring for someone with a memory-related disease is more stressful than helping someone with a physical injury. Due to the demands of caring for someone with Alzheimer’s, caregivers tend to neglect their own health care and well-being. One study shows that up to 47 percent of family caregivers experience depression, but with the right resources, caregivers can successfully balance their time and provide the care their loved ones need.


Caregiver Involvement Leads to Better Cancer Outcomes

Date: October 1st, 2005

Those who have been diagnosed with colon cancer will tell you that the support of friends and relatives is invaluable. A survey of over 100 oncologists shows that physicians agree, and that caregiver involvement can lead to better disease outcomes in elderly colon cancer patients.