Care and the Needs of Those Living with Dementia April 27 2015 Long Term Care Discussion Group DEMENTIA ACTION ALLIANCE Karen Love karenlove4verizonnet CCAL Chris Perna ceoedenaltorg ID: 756216
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Slide1
”Public Perceptions of Dementia
Care and the Needs of Those Living
with Dementia”
April 27, 2015 ~ Long Term Care Discussion Group
DEMENTIA ACTION ALLIANCE
Karen Love,
karenlove4@verizon.net
- CCAL
Chris
Perna
,
ceo@edenalt.org
– The Eden Alternative
Sandy Halperin,
sandyhalperin@gmail.comSlide2
1
o
ut
o
f
9
Am
ericans
A
ge
65
&
older
have
dementia.
Chances
are
you
know
someone
.Slide3
Facts About Dementia
Most prevalent type of dementia is Alzheimer’s, vascular, Lewy Body, Frontotemporal
, mixed dementia, Parkinson’s 6th leading cause of death - only one with no cure, no form of prevention, no means to slow progressionAffects 5.3 million Americans – projected to increase to 13.8 million affected by 2050
Dementia is the most expensive healthcare condition in the U.S. – annual estimated cost at $215 billion and projected to be over a trillion dollars by 2050
Dementia is escalating at an alarming rateSupports & services are fragmented and often hard to findSlide4
Facts About Dementia
More than 15 million Americans currently provide an estimated 17.7 billion hours of unpaid care annually to family members or friends with dementia.Nearly 40% report quitting jobs or work hours to provide care.
Many experience negative physical and mental health effects. Slide5
U.S. Response to Dementia
National Alzheimer’s Project Act (NAPA) signed into law Jan 2011.Concern –
Focus on CUREAlzheimer’sNo one living with dementia on Adv CouncilPerson-centered care practices not includedSlide6
Formed the Dementia Action Alliance in 2012 ~ a volunteer coalition committed to helping people live fully with dementia and supporting those who care about them. The Alliance is engaged in changing understanding of and attitudes about dementia
. Slide7
Dementia StakeholdersSlide8
DAA Leadership TeamSlide9
1st Dementia Thought Leaders Summit
June 2012 ~ Washington, DCObjective –
Form consensus agreement on a definition and conceptual & operational framework for person-centered dementia care. Slide10
1
st Summit Outcome Slide11
National
survey of what Americans feel are important dementia priorities and needs (Spring 2014)
Funded by The Retirement Research FoundationSlide12
June 2014Slide13
Rand’s “Improving Dementia Long-Term Care: A Policy Blueprint”
3 major areas –Service deliveryWorkforceFinancing
5 objectives –Increase public awareness to reduce stigma & promote earlier detection.Improve access to & utilization of LTSS for persons w/ dementia.
Promote high quality, person-centered care.Provide better support for family caregivers.Reduce burden of LTSS costs on individuals and families.Slide14
2nd Dementia Thought Leaders Summit
June, 2014 ~ Washington, DCObjective –
Form consensus agreement on what is needed to improve dementia care in this country.Slide15
WORDS MATTER
PREFERRED: Dementia, including Alzheimer’s –
More inclusive. PREFERRED: Person
living with dementiaAVOID - “Patient” as it is a stigmatizing term. “Living” underscores that people
continue to live with dementia.Slide16
2nd Summit Outcome
LIVE FULLY WITH DEMENTIA
WORKGROUPSSlide17
“PERSON-CENTERED MATTERS” Videohttp://daanow.org/an-extraordinary-video-about-dementia
Public service video announcement ~ Funded by the Commonwealth of Virginia’s Alzheimer’s and Related Diseases Research Award Fund ~ 2014
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WEBSITE - www.daanow.orgSlide19
A Philosophy of Living
By Max McCormick who is living with dementia.