Most Caregivers Of People With Dementia Are Family Members, And They Need Help


Published:

Family care of an older adult has emerged as an essential element of the U.S. health care system, with 83 percent of long-term care provided to older adults coming from family members or other unpaid helpers. As the population of older adults grows, so too does the expectation of family care for persons living with dementia.

We have engaged in decades of research, documenting the impact of dementia caregiving on the health and well-being of the caregiver. We have also conducted research to create evidence-based interventions that can be defined as structured programs with positive results that have been scientifically proved through clinical trials.

We have learned much from family caregivers who report that the amount and type of care expected of them is growing, and have concluded that caregiving demands should be matched by community-based support systems. We have advocated for the adoption of one evidence-based intervention, called REACH II (Resources for Enhancing Alzheimer’s Caregiver Health II), which is designed to help caregivers manage daily care into health care and community-based organizations.

Challenges To Family Caregiving

Family caregivers experience multiple challenges daily when caring for a person with dementia, whose care needs steadily increase as cognitive abilities decline. Care burdens can have high physical, emotional and financial costs. An overview, or a meta-analysis, of 84 studies found that caregivers experienced more depression and stress than non-caregivers.

More recently, AARP reported that more than one in three, or 36 percent to be specific, of family caregivers who were not currently in the labor force said they retired early or quit their jobs because of family caregiving concerns.

Despite the critical role that family caregivers play, support programs based on evidence based interventions are not widely available. The National Academies report Families Caring for an Aging America concluded that “few of the nation’s millions of family caregivers of older adults have access to evidence-based interventions.” Moreover, caregivers are often marginalized or ignored by formal health care providers of the person with dementia.

Supporting Family Caregivers

Interventions that combine education about dementia and advice about specific “do’s and don’t’s” of dementia care with guided training and practice appear to be of greatest value to family caregivers. This approach of providing multiple types of support and training allows the intervention to address the vast spectrum of challenges faced by caregivers and allows support and training activities to be tailored to the unique needs of each family.

While scientific research has demonstrated the value of providing education, skills training and support to family caregivers, we have found in our research that health care and social service providers do not routinely provide support programs based on evidence-based interventions. Thus, for the vast majority of family caregivers, caregiving support services remain extremely fragmented if not elusive. Family caregivers are often left alone to provide care that can be complicated and exhausting 24/7.

From our experience, the lack of caregiving support services that are evidence-based is not solely driven by neglect from health care and social support service providers. Rather, existing evidence-based interventions require dedicated personnel who must be trained to deliver the intervention, yet the delivery of the intervention are not covered by Medicare and other third-party payers.

Additionally, family caregivers are often either unaware of existing services, or they are unable to participate due to emotional stresses, time commitments or scheduling concerns. Finally, there are systemic barriers associated with the failure to translate research into practice, resulting in limited program implementation by community-based agencies that provide care to older adults and assistance to dementia caregivers.

Without Care For The Caregiver, The System Crumbles

We believe that forging strong partnerships between health care systems that frequently see patients with dementia and the community-based organizations that provide ongoing supportive services that help caregivers develop skills to deal with negative behaviors associated with memory loss (e.g., agitation or wandering) is necessary to bridge the gap in caregiving services.

Leveraging technology, such as offering online information and support to increase educational opportunities and perhaps even automating some aspects of intervention delivery, will help ensure access to services to the widest possible audience. Working directly with employers to provide proven services to the workforce could mitigate the negative economic impact of premature employment reduction.

While changes in the health care system and workplace are important, we believe that all sectors of our society need to more formally recognize family caregiver services. Such an approach can change attitudes, reduce stigma and foster caring and supportive behavior toward those living with dementia. One example is the Dementia Friendly America initiative, a national effort to support and serve those who are living with dementia, their caregivers and families.

Communities are also taking action by leveraging tailored resources in business, community-based services and supports, faith communities, health care communities, legal and financial services, local government and residential settings.

While improvements are needed in all community sectors recognized by the Dementia Friendly America model, this is especially so in the health care sector. Family caregivers are the source of greatest impact on the health of a person living with dementia, yet are often excluded in conversations with the person’s health care providers. Health care providers should be encouraged to document the role of the family caregiver in the a patient’s electronic health record.

Also, health care providers should make every attempt to involve the family caregiver in all health care interactions, especially in discharge planning after a hospital stay. As a sector, health care systems can also facilitate a dementia friendly approach by directing families to community-based social support services to address common challenges such as getting medications and transportation to health care appointments.

There is a role for higher education as well. Colleges and universities could help prepare a dementia-friendly health care work force to meet the needs of the growing numbers of persons with dementia, estimated to nearly triple by midcentury with an American being diagnosed with dementia every 33 seconds. Attention to dementia-friendly practices such as differentiating dementia from normal aging, early investigation of dementia symptoms by a health care professional and basic training in how to communicate with a person with dementia should be encouraged across the social and health disciplines.

Our care system depends heavily on family caregivers. 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 Conversation

Alan Stevens, Professor of Medicine; Director, Center for Applied Health Research, Texas A&M University ; Carole White, Professor and Nancy Smith Hurd Chair in Geriatric Nursing and Aging Studies, University of Texas at Austin; Marcia G. Ory, Regents and Distinguished Professor, Associate Vice President for Strategic Partnerships and Initiatives, Texas A&M University, and Sandhya Sanghi, Assistant Investigator, Texas A&M University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

See also:
How To Decrease Your Risk For Dementia By 90 Percent
5 Questions To Ask Your Aging Parents’ Doctors

Edit Module
Edit ModuleShow Tags
Edit Module Edit ModuleShow Tags

Daily Astrology

February 18, 2019

Venus’ conjunction with Saturn can sometimes symbolize the end of a partnership or the beginning of a meaningful new alliance. Mentors, students, and karmically connected souls often meet under this alignment. This evening the Sun arrives in mysterious…
Edit ModuleShow Tags

Alternative Health Directory

Browse all listings »

Edit ModuleShow Tags
Edit ModuleShow Tags

Calendar

February 2019

Celebrating The Love And Valentine’s Week! Come detox, relax and get your romance or couples readings while you recharge in our sanctuary! We have a fun line up of readers and healers...

Cost: 3 service special - $60, single service- $25

Where:
The Healing Power of Flowers - Heaven and Earth
68 Stiles Rd
Unit A
Salem, NH  03079
View map »


Sponsor: The Healing Power of Flowers - Heaven and Earth
Telephone: 603-275-7688
Contact Name: Stacey Smith
Website »

More information

Our outer world is a reflection of what lies within our collective inner worlds. By directing our thoughts in specific, positive ways, we have the potential to guide the world towards becoming a...

Cost: Free

Where:
Inner Space Meditation Center & Gallery
1110 Massachusetts Ave.
Cambridge, MA  02138
View map »


Telephone: 617-547-1110
Website »

More information

Three weekly workshops with Ayal will be offered on February 10, 17, 24 from 10:30 to 11:30am In this meeting, we will talk about sleep and remind or teach simple techniques for an easier...

Cost: $20

Where:
Sohum Yoga and Meditation Studio
30 Lyman Street, Suite 108B
Westborough shopping center
Westborough, MA  01581
View map »


Sponsor: www.SOHUM.org
Telephone: 508-329-3338
Contact Name: Ritu Kapur
Website »

More information

Show More...
Show Less...
No Events

MBSR: Mindful Based Stress Reduction Learn how to tap into your inner well of strength, peace, and ease. Mindfulness, as taught in the MBSR program, is recognized worldwide as the gold...

Cost: Free

Where:
Enlightened Interventions
25 Union St.
Worcester, MA  01608
View map »


Sponsor: The Center for Resilient Living
Telephone: 508-556-7022
Contact Name: Ginny Wholley
Website »

More information

Show More...
Show Less...

Wednesday, February 20th–Saturday, February 23rd 9am-3pm each day Experience transformation guided by Mother Mary. Through Divine vibration, you will be aligned for quicker healing and...

Cost: $500

Where:
, MA


Sponsor: The LoveLight Center
Telephone: (207) 216-9584
Contact Name: Cheryl Banfield

More information

Discover how you can release tight muscles and improve range of motion in locked joints in a weekly ESSENTRICS stretch classes led by Raindrop Fisher, certified Essentrics instructor. Raindrop is a...

Cost: $10 drop-in / $100 for 12 classes

Where:
Village at Waterman Lake
Function Room - Chalet Bldg
715 Putnam Pike
Greenville, RI  02828
View map »


Sponsor: Healthier Fit Lifestyle
Telephone: 401-678-0950
Contact Name: Raindrop Fisher
Website »

More information

Show More...
Show Less...

ESSENTRICS with Raindrop is a dynamic, one-hour, slow-movement stretch and strengthening class that uses all the muscles of the body to liberate stiff joints and rebalancing the body so that you...

Cost: $5 donation

Where:
Pascoag Public Library
57 Church Street
Pascoag, RI  02859
View map »


Sponsor: Healthier Fit Lifestyle
Telephone: 401-678-0950
Contact Name: Raindrop Fisher
Website »

More information

This 8 week series in Tai Chi will provide you with everything you need to get started in a personal Tai Chi practice. Just for Beginners—there is no expectation, and no pressure in...

Cost: $137 for 8 weeks

Where:
Spiral Path Connections
218 Boston Street
Unit 104
Topsfield, MA  01983
View map »


Sponsor: The Spiral Path
Telephone: 978-314-4264
Contact Name: Johanna Hattendorf
Website »

More information

With Sherri Snyder-Roche. This yoga workshop will explore self-compassion, self-love and pushing through discomfort to help your recovery process. Recovery from divorce, eating disorders,...

Cost: $95 for 6 weeks or $17 drop in

Where:
State of Grace Yoga and Wellness Center
104 E. Hartford Avenue, Unit A
Uxbridge, MA  01569
View map »


Telephone: 508-278-2818
Website »

More information

Show More...
Show Less...

“Master your breath, let the self be in bliss, contemplate on the sublime within you.” —Krishnamacharya Join us for an evening of deep exploration and transformation using the...

Cost: $30 (some hardship rates available)

Where:
Spontaneous Celebrations
45 Danforth Street
Jamaica Plain, MA  02130
View map »


Telephone: 617-233-6410
Contact Name: Allen Howell, M.Ed.LMHC
Website »

More information

Show More...
Show Less...

Great readings at a great rate - only $20 for 15 minutes. Join us for a great day with lots of specials too! Featuring Amit’s Tibetan Singing Bowls and Silver Jewelry Sale!...

Cost: $20 for a 15 minute reading

Where:
Circles of Wisdom
386 Merrimack Street
Suite 1-A
Methuen, MA  01844
View map »


Sponsor: Circles of Wisdom
Telephone: 978-474-8010
Contact Name: Cathy Kneeland
Website »

More information

This workshop will be a wonderful and interactive experience for parents and their child. You will:  1. Learn the importance of developing focus through basic mindfulness exercises....

Cost: $40

Where:
Sohum Yoga and Meditation Studio
30 Lyman Street, Suite 108B
Westborough shopping center
Westborough, MA  01581
View map »


Sponsor: www.SOHUM.org
Telephone: 508-329-3338
Contact Name: Ritu Kapur
Website »

More information

Join us as we herald in the month of love with the archangels! It will be an evening of healing and soul replenishment. Our event will open with a brief message of love and support from the...

Cost: $40

Where:
private office
North Andover, MA  01845


Sponsor: Diana Harris
Telephone: 978-973-6637
Contact Name: Diana Harris
Website »

More information

6 Saturdays 10am–11:30am February 23–March 30, 2019 Taijiquan (Tai Chi ) is a healing martial art, using breath and movement together to strengthen the body and quiet...

Cost: $120

Where:
Metta Wellness
679 Pleasant Street
Paxton, MA  01612
View map »


Sponsor: Metta Wellness
Telephone: 774-245-5487
Contact Name: Rick Rocha
Website »

More information

Show More...
Show Less...
Edit ModuleShow Tags
Edit Module Edit ModuleShow Tags