Fac­ing Alzheimer’s:

Care & Iden­tity

PS Magazine - - NEWS -

Michelle is an 82-year- old ex­tro­vert with an imp­ish smile and ex­pres­sive hands. A life-long an­i­mal lover, Michelle never mar­ried or had chil­dren, but she es­tab­lished a lo­cal an­i­mal shel­ter and cared for sev­eral of her own pets.

Michelle is liv­ing with Alzheimer’s dis­ease, and re­sides in an as­sisted liv­ing com­mu­nity where staff mem­bers know her well. Her room is full of pho­tos of an­i­mals, and staff made a small al­bum of her pets that Michelle can show other res­i­dents. When ther­apy dogs visit the res­i­dence, staff seek

out Michelle be­cause she loves to walk with them through the halls. De­spite sig­nif­i­cant lapses in her mem­ory, Michelle’s iden­tity re­mains, and staff re­in­force it through the way they in­ter­act with her and the things around her.

“We find that peo­ple with Alzheimer’s and other de­men­tias don’t ac­tu­ally lose their sense of self, in­stead, they lose the abil­ity to com­mu­ni­cate as­pects of them­selves. If they can’t tell you who they are or who they’ve been, it’s up to us— care­givers, fam­ily, and friends—to reach out and find ways to con­nect based on what we know about them,” says Sam Fazio, Ph.D., direc­tor of Con­stituent Ser­vices at the Alzheimer’s As­so­ci­a­tion. Stud­ies of peo­ple with Alzheimer’s dis­ease show that de­spite cog­ni­tive im­pair­ment they can still rec­og­nize them­selves in mir­rors and pho­to­graphs, use pro­nouns like “I” and “me,” and de­scribe what they felt and be­lieved dur­ing sig­nif­i­cant life events, such as go­ing to war or cel­e­brat­ing their wed­ding day.

“Iden­tity is more than mem­ory,” Fazio ex­plains. “It’s im­por­tant to find out who a per­son with de­men­tia has been their whole life and to weave that into your in­ter­ac­tions with them. For ex­am­ple, if you know that the per­son with Alzheimer’s used to be a dancer, you can ask them about their per­for­mances while help­ing them with a bath.”

Fazio is de­scrib­ing “per­son- cen­tered care,” an ap­proach that views the per­son liv­ing with Alzheimer’s as an in­di­vid­ual, not just as a pa­tient with symp­toms to man­age.

The fol­low­ing prin­ci­ples are the ba­sis be­hind per­son-cen­tered care:

• Value the per­son with de­men­tia and the peo­ple who care for them.

• Treat peo­ple as in­di­vid­u­als.

• Look at the world through the per­son’s eyes.

• Pro­vide a pos­i­tive so­cial en­vi­ron­ment that sup­ports the per­son’s well-be­ing1.

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