Building a Person-Centered Culture

for Dementia Care

BY DEBRA WOOD, R.N.
With millions of Americans e!eriencing dementia and the num"er gro#ing #ith an aging
!o!ulation, researchers continue to see$ effecti%e !re%ention and treatment methods, #hile
man& long-term care !ro%iders are !lacing more em!hasis on ho# "est to care for !eo!le
#ith dementia.
'We(re hearing more from families regarding their concerns a"out the )ualit& of care and
ser%ices a%aila"le for their lo%ed ones #ith dementia, not sur!rising gi%en the millions of
!eo!le affected "& it and ho# costl& care is,* sa&s +ac$ie Pin$o#it,, -Ed, chair of CCA.-
Ad%ancing Person-Centered .i%ing in Colts Nec$, N+, a national ad%ocac& organi,ation,
#hich created the !erson-centered National Dementia /nitiati%e, and an instructor at Rutgers
0ni%ersit& 1chool of 1ocial Wor$, 2erontolog& Program.
3he 4567 Alzheimers Disease Facts and Figuresfrom the Al,heimer(s Association estimated
8.4 million Americans ha%e Al,heimer(s disease, a num"er !ro9ected to increase to :.6
million "& 4548 and 67.; million "& 4585.
'3he "est !ractice is !erson-centered care,* re!orts Ruth Dre#, director of famil& and
information ser%ices at the Al,heimer(s Association in Chicago. 'Care is focused on the
indi%idual.*
Person-centered care offers a humanistic and holistic a!!roach to caring for someone. /t
incor!orates not onl& !h&sical considerations "ut also the !erson(s !s&chosocial and s!iritual
#ell-"eing.
'/t(s a multidimensional frame#or$, and it re)uires o#ners and a go%ernance "oard #anting
to ma$e these changes,* sa&s Pin$o#it,.
3he Dementia /nitiati%e "rought together an e!ert !anel to determine "est !erson-centered
!ractices and offer guidance. 3he initiati%e !roduced a consensus #hite !a!er, Dementia
Care: The Quality Chasm.
'We #ant sta$eholders across research, !olic& and !ractice to use this !a!er as a call to
action to collecti%el& address and ad%ance !erson-centered solutions,* Pin$o#it, adds.
3he document !resents a histor& of the !hiloso!h& for !erson-centered care as #ell as
o!erational and !ersonali,ed !ractices for deli%ering care in this #a&. /t also offers
recommendations to address "arriers and challenges to care.
-an& .eadingAge mem"ers ha%e em"raced !erson-centered care and ha%e de%elo!ed
inno%ati%e !rograms to ad%ance dementia care #ithin their organi,ations.
Delivering Person-Centered Care
1#itching from an institutional focus to a resident or !erson-centered focus re)uires a
change in organi,ational culture, often not an eas& tas$. 1taff must hone in on the things that
im!ro%e the !erson #ith dementia(s )ualit& of life.
'/t(s the right thing to do, and it ma$es caregi%ers( 9o"s more en9o&a"le and safer,* Dre#
sa&s.
Peo!le #ith dementia still ha%e a human desire to connect #ith other !eo!le and ha%e a
sense of self, Dre# adds. Caregi%ers can use residents( life e!eriences as a $e& to connect.
'You ha%e to $no# the !erson and #ho the& trul& are, $no# their interests and %alues,*
Pin$o#it, ad%ises. 'Don(t focus on #hat the& cannot do, "ut #hat the& en9o& and can do. /t(s
a"out creating #arm, caring relationshi!s.*
Once caregi%ers reall& $no# the !eo!le in their care as indi%iduals, the& learn #hat things
the older adult finds comforting and u!setting, Dre# e!lains. /t also re)uires #atching for
cues. <or instance, if someone shies a#a& from or a!!ears fearful of a thera!& dog that
most !eo!le are fa#ning o%er, di%ert that !erson to a different acti%it&.
.ong gone are the da&s of 'realit& orientation,* in #hich the !rofessional caregi%er #ould
correct the dementia !atient and attem!t to reorient him or her to the caregi%er(s realit&.
Rather than tr&ing to tell someone determined to 'go to #or$* that the& are no longer
em!lo&ed, the "etter res!onse is to gi%e them a tas$ to do.
The Community at Brookmeade
Elfriede Russel (left) cuts the rug with Regan mith! "ew Day #rogram coordinator at The Ba#tist
$ome at Brookmeade% Russel! once a #rofessional dancer in &ienna! thoroughly en'oys dancing to
music from her #ast that (rings (ack wonderful memories% he en'oys the #hysical freedom she
feels when dancing%
'3hat #as a culture change,* sa&s =aren >o"el, administrator of 3he Ba!tist ?ome at 3he
Communit& at Broo$meade in Rhine"ec$, NY. 'We had to reassure staff that the& are not
misleading the resident, "ut rather ste!!ing into his or her #orld.*
3he Ba!tist ?ome is in the !rocess of training all staff and %olunteers, using the Centers for
-edicare @ -edicaid 1er%ices( ?and in ?and!rogram. 3he si sessions hel! #ith
understanding dementia, !ro%ide resources to use #ith residents, ad%ise not ta$ing
"eha%iors !ersonall&, and suggest #hen to !ull "ac$ and ho# to a!!roach residents and
families.
'/ #as gi%en tools to teach me ho# to ste! into that other !erson(s #orld, and that #as the
most im!ortant !art of the trainingAho# to recei%e them #here the& are,* adds 1usanne
Bernard, de%elo!ment director at 3he Communit& at Broo$meade.
3he use of anti!s&chotic medications also has fallen out of fa%or, after a De!artment of
?ealth and ?uman 1er%ices Office of /ns!ector 2eneral re!ort a"out at&!ical anti!s&chotic
-edicare drug claims for !eo!le #ith dementia li%ing in nursing homes. 3he office found 6B
!ercent of the residents had such claims, and ;7 !ercent #ere ordered 'off la"el.* /n
res!onse, the Centers for -edicare @ -edicaid 1er%ices launched an initiati%e to reduce the
use of those drugs.
Ann -. =olano#s$i, PhD, RN, a nursing !rofessor at Penn 1tate 0ni%ersit& in 0ni%ersit&
Par$, PA, led a grant-funded multidisci!linar& effort to create a !erson-centered tool"o for
"eha%ioral health, #hich she e!ects #ill "e released this fall.
3he tool$it for nursing homes includes information a"out esta"lishing a nondrug focus
throughout an organi,ation and offers suggestions of e%idence-"ased and cost-effecti%e
methods other than medications to manage difficult "eha%iors. Recommendations include
using music to calm !eo!le do#n and eercise !rograms to channel ecess energ& in
!eo!le #ho #ander.
)nnovative Dementia ervices Committee *ims to Disseminate Best
Practices
'All our communities are seeing an increase of dementia in their residents, #hether in
CCRCs or assisted li%ing. .eadingAge mem"ers are interested in )ualit& of life and care, and
man& are loo$ing for guidance in ho# to "est a!!roach dementia. E%en communities #ith
dementia !rograms are #ondering ho# to ma$e them "etter, ho# to find educational
!rograms to hel! them.*
3hose are the #ords of =athleen Bla$e Curr&, chair of the ne# .eadingAge /nno%ati%e
Dementia 1er%ices 1teering Committee. Curr& is %ice !resident, strateg& for dementia care
for E-A, Elders"urg, -D.
-ore
* Person-Centered *##roach to Difficult Behaviors
All "eha%iors are communication. When someone acts out of character it means the& are
tr&ing to tell us something.
'We ha%e to loo$ at the #orld through their e&es and tr& to decode #hat the& are sa&ing,*
Dre# sa&s. 'We start from the !remise that e%er&thing the& do has a meaning, then that
hel!s us figure out the meaning and res!ond to #hat the& are tr&ing to sa&.*
Dre# offers as an eam!le, a demure #oman #ho al#a&s dressed #ell "ut suddenl& started
ta$ing off her clothes from the #aist do#n. 3he nurse suggested o"taining a urine sam!le,
#hich indicated the #oman #ith dementia had an infection. Remo%ing her clothes #as an
attem!t to relie%e the discomfort. Once treated, she $e!t her clothes on.
'Peo!le #ho cannot tal$ a"out their needs still ha%e needs,* Dre# re!orts. '3he& still are
hungr&, thirst&, need to use the restroom, or are hot or cold. /f #e are good at figuring out
#hat the& are tr&ing to sa&, #e gi%e much "etter care. And it(s a lot "etter caring for someone
ha!!& and comforta"le. /t #or$s out #ell for e%er&"od&.*
Dre# also recommends slo#ing do#n and not tr&ing to mo%e too fast around !eo!le #ith
dementia, #ho cannot !rocess things )uic$l&.
'/f &ou ta$e a gentle calm #a& at their !ace, it hel!s them rela and "e at their "est,* Dre#
ad%ises.
3raditionall& difficult times, such as meals and "athing, can im!ro%e #ith a !erson-centered
a!!roach.
Dre# recommends a !leasant, home& en%ironment for dining, to feed finger food and use
color contrasting foods, offered one or t#o at a time. Rather than feeding the !erson,
encourage the !erson to do as much as the& can for as long as the& can. 0se cuing or hand-
o%er-hand techni)ues to assist rather than do for the !erson.
Peo!le #ith dementia often ha%e issues #ith #ater. Warm the "athroom. One that loo$s li$e
home can "e hel!ful as can tr&ing to $ee! to a former routine. Partiall& co%er the !erson #ith
a to#el and offer a #ashcloth to hold o%er the face. Perha!s sing #ith a !erson #ho used to
%ocali,e in the sho#er or offer a fa%orite coo$ie to someone food-moti%ated.
'=no#ing the !erson and euding #armth can o%ercome a lot of difficulties,* Dre# sa&s.
Program Em(races Person-Centered Care
The Community at Brookmeade
+annie Caragine (left) and *nne $um(ach #artici#ate in the art thera#y #rogram at The Ba#tist $ome
at Brookmeade% Caragine was a #rofessional hair stylist and en'oys self-e,#ression% $um(ach is an
artist and has en'oyed a lifelong love of art% *t *nne-s we(site! htt#.//www%anniesstories%com/! her
grandson Ro( *ndren has lovingly #laced his "ana-s stories for all the world to en'oy%
3he Ba!tist ?ome esta"lished its Ne# Da& !rogram to !ro%ide creati%e acti%ities for
residents of its s$illed nursing facilit&. 3he D&son <oundation !ro%ided a C65,555 grant.
Residents can !artici!ate si da&s !er #ee$ in the morning, afternoon or "oth. A"out D8
!ercent of residents, at all functional le%els, !artici!ate in one or more sessions. Certified
nursing assistants assigned to acti%ities greet !artici!ants as the& arri%e to ma$e coo$ies or
!i,,a, create art#or$, eercise or reminisce a"out mo%ies.
'We tr& to do things that are the norm,* >o"el sa&s. '3his !attern and routine has decreased
"eha%iors and decreased confusion. We ha%e residents #a$e u! in the morning e!ecting to
go some#here.*
Residents ma& thin$ the& are going to #or$ or to school. <amilies are encouraged to 9oin in,
or sit or #al$ in the Court&ard, #here 3he Ba!tist ?ome has installed a mail"o stuffed #ith
'mail,* a clothesline, a gardening cart, shad& seating and a "us sto!Etrain station. When a
resident sa&s he needs to catch a "us to #or$, a staff mem"er ta$es him to that '"us sto!.*
3he residents can !ic$ flo#ers and ma$e center!ieces. 3he facilit& also has esta"lished a
#al$ing !rogram.
'/t(s thin$ing out of the "o,* >o"el sa&s. 'E%er&"od& is different, and &ou ha%e to ha%e a
num"er of resources in &our tool"o.*
1ome !atients ha%e come off medications. 3he facilit& does not use restraints.
3he -usic and -emor& !rogram allo#s residents to listen to familiar music on an iPod. 3he
music tends to calm residents. /t also hel!s them "riefl& regain s$ills the& had lost to
dementia. 3he effect lasts for a short time after the music is off, gi%ing families o!!ortunities
to con%erse #ith lo%ed ones.
"on#harmaceutical )ntervention )m#roves +unctioning
Eli,a +ennings in .a$e#ood, O?, has introduced an inter%ention, called 1A/DO .earningF,
#hich has reduced and re%ersed s&m!toms of cogniti%e im!airment, re!orts De"orah ?iller,
Eli,a +ennings !resident and CEO. /t is the first 0.1. organi,ation to incor!orate the
!rogram, #hich originated in +a!an. Eli,a +ennings e!anded the !rogram to all of its
locations and #ill soon "ecome the onl& training center for the inter%ention in the 0nited
1tates.
?iller learned a"out the non!harmaceutical inter%ention and an o!!ortunit& to !artner #ith
the =umon /nstitute for Education in +a!an on a research trial and did not hesitate to
!artici!ate.
Eli0a 1ennings
*t Eli0a 1ennings! residents and staff are #ioneering the use of *)D2 3earning in the 4nited tates%
'/ sa# this a!!roach could dri%e !erson-centered care to a greater degree than it eisted for
us, e%en though #e had "een in%ol%ed #ith the !erson-centered care mo%ement for more
than a decade,* ?iller sa&s. '3he research from +a!an demonstrated that 1A/DO .earning
im!ro%es the s&m!toms of dementia.*
1A/DO .earning consists of 75-minute thera!eutic sessions of sim!le reading, #riting and
arithmetic fi%e da&s !er #ee$ for each !artici!ant, called a 'learner,* #ith a staff mem"er,
called a 'su!!orter.* Residents !a& C685 !er month. Donations !ro%ide funding for Eli,a
+ennings residents una"le to !a& for the !rogram.
Each !erson is started at his or her indi%idual le%el and !rogresses. 3he learners com!lete
the #or$sheets in a #a& in #hich the& are al#a&s successful. 3hrough a !henomenon $no#n
as the transfer effect, the !refrontal corte stimulation causes im!ro%ements in other as!ects
of the learner(s memor&, such as acti%ities of dail& li%ing or engagement #ith others.
Partici!ants must continue in the !rogram for sustaina"le results.
Each su!!orter #or$s #ith t#o learners. Although it sounds la"or-intensi%e, Eli,a +ennings
has not needed to add staff.
3he trial, conducted at Eli,a +ennings in 4566 #ith 47 residents and 4B controls at a different
in-net#or$ communit& during a si-month !eriod, found residents in the inter%ention grou!
im!ro%ed on the mini-mental state eam, #hile the controls( !erformance declined.
Additionall&, as a secondar& outcome, -D1 results sho#ed a B5 !ercent im!ro%ement in the
inter%ention grou! and a :8 !ercent decline in the controls. -ood se%erit& im!ro%ed in the
inter%ention cohort #hile the controls e!erienced a clear decline.
'/t(s almost "e&ond "elief, until &ou see it,* ?iller sa&s.
Eli,a +ennings is training all of its em!lo&ees in 1A/DO .earning, so the& could recogni,e
su"tle im!ro%ements occurring in !artici!ating residents, such as a shado# of an e!ression
on a learner(s face.
'Dail& #e see changes,* ?iller re!orts. '3he data su!!orts the da&-to-da& im!ro%ements,
#hich "order on miraculous.*
Residents ha%e regained continence, rest more comforta"l&, can use the tele!hone and
communicate #ith famil& mem"ers, and are a"le to do more for themsel%es.
?iller antici!ates 1A/DO .earning could ha%e !rofound effects on health care costs. Care for
!eo!le #ith dementia #ill cost C457 "illion this &ear, according to the Al,heimer(s Association
fact "oo$.
'/n +a!an, the& ha%e seen a reduction in the amount of care !eo!le need,* ?iller sa&s. '/t
could reduce health care costs in the 0nited 1tates if 1A/DO .earning #as #idel& a%aila"le.*
"ew *## timulates )nteraction! elf-E,#ression in Those 5ith Dementia
C1E enior3ife
C+E 1enior.ife of Chicago recentl& un%eiled a ne# iPad a!! that "uilds on its esta"lished Art
in the -oment !rogram, a 9oint %enture "et#een C+E 1enior.ife and 3he Art /nstitute of
Chicago. 3he Art in the -oment a!! #as made !ossi"le #ith funding from the Al,heimer(s
<oundation of America and de%elo!ed "& 1ch#ar3ech Consulting ..C. 3he a!! dis!la&s
selected #or$s of art found in 3he Art /nstitute(s collection to ser%e as a con%ersation !iece
"et#een caregi%ers and indi%iduals #ith Al,heimerGs disease, stimulating interaction and
encouraging self-e!ression. /t also offers #a&s for users to engage in art-ma$ing acti%ities
on their o#n.
-ore
De(ra 5ood! R%"%! is a writer who lives in 2rlando! +3%
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