Professional Documents
Culture Documents
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
(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:
(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
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.
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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
• 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
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
OBJECTIVES
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.
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AARP Resources for Family Caregivers
aarp.org/caregiving 1-877-333-5885
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aarp.org/cuidar
Online Community
aarp.org/caregivingcommunity
aarp.org/caregivingcommunity
5 Steps to Help You Through Your
Caregiving Journey
3. Make a Plan
4. Find Support
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