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Dementia Caregiving

Amy Goyer
AARP’s Family & Caregiving Expert
Our Family Story
July 2013 – Back Home Again
6 months
The Big Move
40 days & nights
Selling the family farm
The Big Move… Back!
No hospitalizations for over a year!
September 2013
Dad’s 90th birthday
February 2016
Juggling Life, Work & Caregiving…and Grief
Caregiving for loved ones who are living with
dementia is more stressful, time-consuming,
It’s caregiving on steroids.

• 5.8 Million people living

with Alzheimer’s dementia
– 81% are age 75+
– 1 in 10 people age 65+
– 2050: predicted 14
• 1 in 3 older adults die
with dementia – 6th
leading cause of death in
the U.S.
(Source: 2019 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association , 2019)
Family Caregiving
All family caregivers:
• Total 40 million U.S. family caregivers providing unpaid care
• 37 billion hours of care
• $470 billion value of care
• Caring for those with strokes, heart disease, diabetes,
arthritis, Parkinson’s, CP, MS, ALS, etc…

Half of all caregivers care for someone living with dementia:

• More than 16 million family caregivers providing unpaid care
for those living with dementia
• 18.5 billion hours of care
• Valued at more than $234 billion
(Sources: Caregiving in the U.S., 2015, AARP & Natl. Alliance for Caregiving.
2019 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association, 2019.)
Dementia Caregivers
• Majority of care provided by family; some friends
• Help with ADLs, IADLs, health care, emotional support,
finances, home, safety, shopping, transportation,
communication, care coordination, advocacy, safety
• More likely to be an adult child caring for parent
• About one in three is age 65+
• About 2/3 of dementia caregivers are women; over 1/3 are
• 66% live with the person with dementia
• About 25% care for an aging parent & children under 18
• 65% say the care for loved one due to desire to remain at

(Source: 2019 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association, 2019.)
Dementia Caregivers

Racial/Ethnic Breakdown:
• 2/3 of dementia caregivers are non-Hispanic white
• 10% are black/African American
• 8% are Hispanic
• 5% are Asian
• These percentages may in part reflect the
prevalence of Alzheimer’s disease and related
dementias among different racial/ethnic groups

(Source: 2019 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association, 2019.)
Dementia Caregiving is Costly
• Families take on 70% of the
lifetime cost of caring for those
with dementia, including:
– Out-of-pocket expenses
– Health care
– Long-term care
– Value of unpaid care
• 41% of dementia caregivers have
a household income of $50,000 or
• Ave. family caregiver spends
$7000/yr. out-of-pocket
– Doubles for dementia
(Sources: 2019 Alzheimer’s Disease Facts
caregivers and Figures, Alzheimer’s Association, 2019.
Caregiving in the U.S., AARP & NAC, 2015.)
Dementia Caregivers Spend More Time
Hours and Years

(Source: Caring for People with Dementia: Caregivers’ Experiences, AARP, 2018.)
Compared to Other Caregivers, Dementia Caregivers:
• Make more adjustments in their
• Seek more information and
support from a greater variety of
• Worry more about finances
• 60% of all caregivers also work at a
paid job – but dementia caregivers
are twice as likely to make changes
at work: hours, leaving early or
unexpectedly etc.
(Source: Caring for People with Dementia: Caregivers’
Experiences. Anderson, G Oscar; Washington, DC: AARP
Research, November 2018.)
Compared to other caregivers, dementia caregivers:

More likely to report:

• Delaying health care due to
caregiving (55% vs. 38%)
• Less sleep
• Less time for themselves & friends
• Strained relationships with other
family members
• Feelings of loneliness
• Growing apart relationship with
care recipient (22% vs 13%)
• More anxiety and depression

(Sources: 2019 Alzheimer’s Disease Facts and Figures, Alzheimer’s Association, 2019. Caring
for People with Dementia: Caregivers’ Experiences, AARP, 2018.)
Dementia Caregivers Help with ADLs & IADLs

(Source: 2019 Alzheimer’s Disease Facts and

Figures, Alzheimer’s Association, 2019.)
Challenges for Dementia Caregivers
• Emotional – recognition, patience, witnessing change,
grief, ambiguous loss
• Complex – Co-existing health conditions
• Difficult behaviors – fear, anxiety, confusion
• Communication
• Visual impairment
• Medical/nursing tasks are more difficult
• Constant change - shifting abilities and meaningful
• Progressive, unpredictable
• Long-term commitment
Challenges for Dementia Caregivers

Lack of:
• Knowledge - treatments, symptom & behavior
management, importance of early diagnosis & cognitive
• Family support – often falls on one
• Social support – Accessible support groups, friends
• Systems support – understanding of the needs, costs
• Trained, capable volunteers and paid care providers
• Respite care for dementia
• Time
Dementia Caregiver Support
More support available than in the
past, but…
• Evidence-based caregiver
support strategies are effective
but still not widely available
or known to all dementia
• Lack of awareness of support
options among health and
social service providers
• Lack of technical assistance
for providers about how to
target and reach dementia
Dementia Caregiver Supports & Interventions
Ongoing, culturally appropriate, tailored to individual
• Psychoeducation - disease educ. assessment, community
resources, information, how to ask for and access help,
building confidence
• Behavior management/skills training – activities, medical
tasks, adaptive equipment, environmental, techniques to
reduce and manage behaviors
• Counseling - individual, family, couples, cognitive/behavioral
reframing, coaching
• Self-care activities – stress mgt., yoga, meditation,
mindfulness, journaling, better sleep, physical activity
• Support groups – education, emotional support, resources,
peers, online, phone, in-person, happy hour
Tips for Dementia Caregivers
Every person living with dementia
is unique.

Dementia Caregiving
• Clarify Diagnosis Early
– Observe changes,
document, evaluation,
• Involve the Person Living
with Dementia
– Appropriate (abilities,
discussion, choices,
Stay Positive and Proactive

• Focus on strengths –
Quality of life, routine,
fun, connection, joy
• Physical activity –
adjust as abilities
change; cognitive
• Lifestyle, nutrition
• Cognitive stimulation
as appropriate
Dementia Caregiving

• Get out – daily

activities and
special activities
• Manage stress
• Ease anxiety – fear,
confusion, difficult
• Recognize
depression – treat
Manage Sleep

• Sleep study
• Sleep
• Essential oils
• Sleep sounds
• Meditations
• Lighting
• Increasing
sleep time
Treat and Manage Symptoms
• Medications
– Appropriate physician prescribing
– Effectiveness is unique to each
• Complimentary and alternative
approaches, therapies
– Animals
– Plants
– Music and Art
– Traditional Chinese Medicine
(TCM) & Acupuncture
– Massage
– Intergenerational
Dementia Caregiving
• Manage Finances and Legal
– Powers of attorney, advance
directives, fraud and scams,
estate planning, income,
• Ensure Safety
– Fraud and scams, driving,
cooking, medications, getting
lost, living situation
• Make a Plan: Now and Future
– Tasks, team, budget, living
My Top Caregiving Tips

#1 Build a team; seek and accept help – “I can do

anything but I can’t do everything”

#2 Keep filling your own tank

#3 Monitor your mindset

AARP Brain Health, Dementia and Caregiving
Brain Health Overview
VISION AARP will spark a lifetime of healthier brains and disrupt dementia

Prevention Care Cure

GOALS OR Reduce Risks for Cognitive Optimize Opportunities for Spark Hope For the Future
BOLD MOVES Decline People Living with Dementia
& their Caregivers

Empower people to live brain Inspire adoption and scaling of We will serve as everyday
healthy lifestyles based on evidenced-based best practices innovators in Research (DDF),
evidence and behavior change for the 50+, caregivers, the health Livable Communities (Age and
principles. Maximize the 50+’s and long term care systems as Dementia Friendly Communities),
engagement and contributions to well as communities to drive and Products and Services (ASI
society & minimize periods and social impact and disrupt & AARP Innovations). We can
severity of disability. We will dementia. We can improve quality challenge outdated beliefs on
improve quality of life, disrupt of life & reduce health care costs aging and brain health and spark
aging & reduce health care costs. for those living with dementia & new solutions globally.
their caregivers. Our aim is to
dispel myths and bust stigma to Re
enable better outcomes.

Inclusive empowerment of all people 50 and older and their families

AARP Invests $60 Million to Fund

Research for Cures to Dementia and
National Academies Decadal Survey

AARP Resources for Family Caregivers 1-877-333-5885
Online Community
5 Steps to Help You Through Your
Caregiving Journey

1. Start the Conversation

2. Form Your Team

3. Make a Plan

4. Find Support

5. Care for Yourself

More than 70 Checklists from Talking with Emotional,

brain-stimulating AARP legal Your Adult and Spiritual
activities for expert Children Support
people with
About the
Rest of Your

comprehensive Coloring can
guide provides provide crucial
practical resources stress relief for
and tips caregivers
Home Alone Alliance
AARP Learn@50+
Community Resource Finder
AARP Research
The Upside

• 83% of all caregivers

say overall it has
been a positive

• 75% report that

caring for someone
with dementia has
brought more
meaning to their
A little advice from Daddy…
Amy Goyer AARP Resources
• • Family Caregiving Site:
• Twitter, Instagram, LinkedIn: amygoyer
• Facebook: amygoyer1 • AARP Online Caregiving
• AARP Online Community: agoyer Community:
• AARP Prepare to Care Guides:
• AARP Books:
• Home Alone Alliance Videos:
• AARP Learn @50+:
• I Heart Caregivers:
Amy’s Books
Available at Amazon & Barnes and Noble • Community Resource Finder: