Category Archives: Caregiving – Dementia

Judith Graham writes a “Navigating Aging” column for Kaiser Health News.  Last Thursday’s column is based on a report on family caregiving from the National Academies of Sciences, Engineering and Medicine.

The chair of the panel authored the report says:  “Caregivers are, on the one hand, heavily relied upon but on the other hand overlooked.”  So true!

The panel calls for a family-centered approach to health care that recognizes the important contributions of family caregivers.  You can find the report “Families Caring for an Aging America” here:

www.nationalacademies.org/hmd/Reports/2016/families-caring-for-an-aging-america.aspx

Last Thursday’s “Navigating Aging” column details six recommendations for our health care system — from the point of view of family caregivers — that are extrapolated from the report’s findings.  Ms. Graham describes these as a “practical to-do list for family caregivers”:

1- Your identity needs to be documented in your loved one’s medical records.
2- Your capacity to provide care to a loved one should be assessed.
3- Your capacity to provide care should be incorporated into your loved one’s care plan.
4- You should get training in medical tasks for which you’ll be responsible.
5- You should be connected with community resources that can be of help.
6- You should be given access to medical records and information.

You can find the column about the to-do list here:

khn.org/news/a-practical-to-do-list-for-family-caregivers/

Probably this is enough for most of you…

Robin

Recently I stumbled across the website CaregiverHelp.com.  CaregiverHelp.com is founded by Elaine Sanchez, who has authored a book about being a caregiver, and her husband Dr. Alex Sanchz, a lifelong educator.  This website has lots of useful and entertaining five-minute videos on caregiving topics such as caregiver anger, guilt, depression, and grief.  I liked the title of one of the videos — The 3 F’s of Flipping Out.  (The 3 F’s are fear, fatigue, and frustration, by the way.)

You can find a link to the videos here:

www.caregiverhelp.com/caregiver-videos-m1s1/

Each “module” of videos has an online workbook that you can view and print.

Recently Brain Support Network volunteer Denise Dagan looked over the videos.  Here’s what she has to say…

I highly recommend these videos!

The videos start with a self-assessment to see whether you, as a caregiver, are suffering caregiver burnout.

Then, they explain caregiver stress can shortening your life by 10 years!  You may have heard long-term caregivers often die before the person they’re caring for.  The lessons in this video series will teach you how to cope with the stress as well as is humanly possible, and even become a stronger person.

They teach a simple 3-step process that can be applied to every concept the series covers — anger, guilt, depression, and grief.

Step 1 – Awareness:  Identify specific issues that upset you.  Most efficiently by writing it down.

Step 2 – Acceptance:  This can be hard because we often think there is a solution, but sometimes we have to accept there is nothing we can do.

Step 3 – Action:  Either try some (or all) of the options suggested in each video and worksheet, or learn to let it go.

Each concept (anger, guilt, depression, and grief) has its own module of videos and worksheets to print.  These short writing assignments walk you through the three steps as they apply to each concept.  It’s brilliant because you’re learning a single tool you are able to apply to all types of challenges commonly, and repeatedly, encountered by long-term caregivers.

The last two modules are informative and action-centered:

“Dementia Issues, Caregiver Support for Sex, Violence and other Dementia Issues,” outlines some challenging behaviors and provides insights into how to adjust and adapt to help someone who has suffered those changes, including the basic Do’s & Don’ts.

“Self-Care, a Survival Plan” has 8 worksheets and several videos outlining specific ways to reduce stress, such as:

– Arrange respite

– Ensure you have the proper medical equipment on hand

– Find humor everywhere

– Say goodbye before its too late

– Watch the module 5 videos about preparatory grief

– Understand you only have control over your attitude

– Nurture your spirit

– Reminisce with family

– Stay social

– Get some exercise

– Choose healthful food.

Whether the issues that upset you are caused by other family members, the medical community, or the disease itself, these videos, the information provided, and the tools they teach will help you manage the sometimes overwhelming feelings that are inevitable for long-term caregivers.

Denise

Though this fact sheet is from the Alzheimer’s Society of Great Britain, very little of the article is Alzheimer’s-specific or dementia-specific.  This long fact sheet about the anticipatory grief, ambiguous loss, and bereavement associated with caregiving.  (In the UK, caregivers are called “carers.”)  One type of loss the fact sheet addresses is the loss suffered by placing someone in a care facility.

Here’s one excerpt:

Depending on the carer’s relationship with the person, and their individual circumstances, they may experience the loss of:
• their relationship
• intimacy
• companionship, support and special understanding from the person
• communication between themselves and the person
• shared activities and hobbies
• freedom to work or pursue other activities
• a particular lifestyle
• a planned future
• previous relationship roles.

Here’s a link to the fact sheet:

www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=170

Grief, Loss and Bereavement
Alzheimer’s Society of Great Britain
July 2014

Robin

This Kaiser Health News article is about a report from the National Academies of Science, Engineering, and Medicine on the 18 million people caring for a relative older than 65.  The report argue that “the need to recognize and support caregivers is among the most significant challenges” facing the elderly, families, and society.

“According to the report, people who help elderly family members with three or more personal tasks a day devote 253 hours a month to caregiving — almost the equivalent of two full-time jobs.”

Caregiving has many costs:

* Economic:  “Lost wages and benefits average $303,880 over the lifetimes of people 50 and older who stop working to care for a parent, according to a study cited in the report. That’s not all: A lower earnings history also means reduced Social Security payments for caregivers when they become eligible.”

* Physical and Emotional:  “If their needs are not recognized and addressed, family caregivers risk burnout from the prolonged distress and physical demands of caregiving, and the nation will bear the costs,” the report said.

The author notes that the report “recommended wellness visits, counseling sessions and better training for caregivers who must understand increasingly complicated medical instructions.”

The full article is copied below.

Robin

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khn.org/news/study-elderlys-family-caregivers-need-help-too/

Study: Elderly’s Family Caregivers Need Help Too
Kaiser Health News
By Rachel Bluth
September 13, 2016

Elderly Americans’ well-being is at risk unless the U.S. does much more to help millions of family caregivers who sacrifice their own health, finances and personal lives to look out for loved ones, reported a study released Tuesday.

Nearly 18 million people care for a relative older than 65 who needs help, yet “the need to recognize and support caregivers is among the most significant challenges” facing the nation’s swelling elderly population, their families and society, according to the report from the National Academies of Science, Engineering, and Medicine. Describing family caregiving as “a critical issue of public policy,” a committee of experts in health care and aging said the next presidential administration in 2017 should direct a national strategy to develop ways to support caregivers, including economically.

According to the report, people who help elderly family members with three or more personal tasks a day devote 253 hours a month to caregiving — almost the equivalent of two full-time jobs.

Five years is the median duration that family members care for older adults with high needs, the report said.

For some Americans who accept that responsibility, that can mean taking a less demanding job, foregoing promotions or dropping out of the workforce.

Lost wages and benefits average $303,880 over the lifetimes of people 50 and older who stop working to care for a parent, according to a study cited in the report. That’s not all: A lower earnings history also means reduced Social Security payments for caregivers when they become eligible.

A possible fix for that problem, proposed by researchers in 2009, is to provide caregivers with a Social Security credit for a defined level of deemed wages during a specified time period, the report said.

Leave programs do exist for some workers shouldering caregiving duties, but many lack such job protections.

The federal Family and Medical Leave Act doesn’t cover 40 percent of the workforce. It allows eligible employees to take 12 weeks of unpaid time off to care for certain family members, but the law only applies to those who work federal, state and local governments and private companies with more than 50 employees. But ineligible family relationships for leave include sons- and daughters-in-law, stepchildren, grandchildren, siblings, nieces and nephews. Many workers can’t afford to give up their incomes for 12 weeks.

In 2011, 17 percent of caregivers didn’t take leave because they feared losing their jobs, according to a national survey cited in the report.

The report recommends that family caregivers receive status as a protected class under existing job discrimination laws and that employers get guidance and training on ways to support workers caring for family members.

Beyond the economic costs of caregiving, the report notes that the social and physical toll of caregiving should get more attention than it does.

“If their needs are not recognized and addressed, family caregivers risk burnout from the prolonged distress and physical demands of caregiving, and the nation will bear the costs,” the report said.

Instead of delivering “patient-centered” care, health care providers should adopt “family-centered” models that include checking with caregivers to ensure they are healthy and capable of filling the role. The report also recommended wellness visits, counseling sessions and better training for caregivers who must understand increasingly complicated medical instructions.

Dealing with feeding and drainage tubes, catheters and other complicated medical devices causes stress, and the study’s authors noted that caregivers report “learning by trial and error and fearing that they will make a life-threatening mistake.”

The study was funded by 13 private foundations, the Department of Veterans Affairs, and an anonymous donor that requested the National Academies undertake the research in 2014.

KHN’s coverage of late life and geriatric care is supported by The John A. Hartford Foundation. KHN’s coverage of aging and long-term care issues is supported by The SCAN Foundation.