Dementia Caregiving

Amy Goyer
AARP’s Family & Caregiving Expert
Our Family Story
July 2013 – Back Home Again
6 months
later…
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,
expensive.
It’s caregiving on steroids.
Dementia

• 5.8 Million people living

with Alzheimer’s dementia
– 81% are age 75+
– 1 in 10 people age 65+
– 2050: predicted 14
million
• 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
daughters
• 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
home

(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
less
• 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
lives
• Seek more information and
support from a greater variety of
places
• 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
activities
• Progressive, unpredictable
• Long-term commitment
Challenges for Dementia Caregivers

Lack of:
• Knowledge - treatments, symptom & behavior
management, importance of early diagnosis & cognitive
testing
• 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
caregivers
• 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
caregivers
Dementia Caregiver Supports & Interventions
Ongoing, culturally appropriate, tailored to individual
needs:
• 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.

74
Dementia Caregiving
• Clarify Diagnosis Early
– Observe changes,
document, evaluation,
stages
• Involve the Person Living
with Dementia
– Appropriate (abilities,
stress)
communication,
discussion, choices,
decision-making
Stay Positive and Proactive

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

• Get out – daily

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

• Sleep study
• Sleep
apnea?
• Essential oils
• Sleep sounds
• Meditations
• Lighting
• Increasing
sleep time
Treat and Manage Symptoms
• Medications
– Appropriate physician prescribing
– Effectiveness is unique to each
individual
• 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,
budget
• Ensure Safety
– Fraud and scams, driving,
cooking, medications, getting
lost, living situation
• Make a Plan: Now and Future
– Tasks, team, budget, living
situation
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
GOALS OR Reduce Risks for Cognitive
BOLD MOVES Decline
Empower people to live brain
healthy lifestyles based on
evidence and behavior change
principles. Maximize the 50+’s
engagement and contributions to
OBJECTIVES
society & minimize periods and
severity of disability. We will
improve quality of life, disrupt
aging & reduce health care costs.
Inclusive empowerment of all people 50 and older and their families
Care
Optimize Opportunities for
People Living with Dementia
& their Caregivers
Inspire adoption and scaling of
evidenced-based best practices
for the 50+, caregivers, the health
and long term care systems as
well as communities to drive
social impact and disrupt
dementia. We can improve quality
of life & reduce health care costs
for those living with dementia &
their caregivers. Our aim is to
dispel myths and bust stigma to
enable better outcomes.
Cure
Spark Hope For the Future
We will serve as everyday
innovators in Research (DDF),
Livable Communities (Age and
Dementia Friendly Communities),
and Products and Services (ASI
& AARP Innovations). We can
challenge outdated beliefs on
aging and brain health and spark
new solutions globally.
Re
aarp.org/health/dementia

AARP Invests $60 Million to Fund

Research for Cures to Dementia and
Alzheimer's
StayingSharp.org
GlobalCouncilonBrainHealth.org
National Academies Decadal Survey
MyAlzheimers.net

88
AARP Resources for Family Caregivers
aarp.org/caregiving 1-877-333-5885
91
aarp.org/cuidar
Online Community
aarp.org/caregivingcommunity
aarp.org/caregivingcommunity
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

aarp.org/preparetocare
 aarp.org/caregivingbooks

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
dementia
Rest of Your
Life

AARP’s
comprehensive Coloring can
guide provides provide crucial
practical resources stress relief for
and tips caregivers
Youtube.com/aarp
Home Alone Alliance aarp.org/nolongeralone
AARP Learn@50+ aarp.org/learnat50plus
Community Resource Finder
communityresourcefinder.org
aarp.org/iheartcaregivers
AARP Research
The Upside

• 83% of all caregivers

say overall it has
been a positive
experience

• 75% report that

caring for someone
with dementia has
brought more
meaning to their
lives
A little advice from Daddy…
 Amy Goyer
• amygoyer.com
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• Facebook: amygoyer1
• AARP Online Community: agoyer
Amy’s Books
Available at Amazon & Barnes and Noble
AARP Resources
• Family Caregiving Site:
aarp.org/caregiving
• AARP Online Caregiving
Community:
aarp.org/caregivingcommunity
• AARP Prepare to Care Guides:
aarp.org/preparetocare
• AARP Books:
aarp.org/caregivingbooks
• Home Alone Alliance Videos:
aarp.org/nolongeralone
• AARP Learn @50+:
aarp.org/learnat50plus
• I Heart Caregivers:
aarp.org/iheartcaregivers
• Community Resource Finder:
communityresourcefinder.org