How be­ing friends with some­one who has de­men­tia can be good for you both

Malta Independent - - HEALTH - Uni­ver­sity of Wash­ing­ton Janelle Tay­lor

Each year, in the fi­nal few hours of the last day of De­cem­ber, many peo­ple all across North Amer­ica gather with friends to raise a glass and sing Robert Burns’ fa­mous bal­lad, “Auld Lang Syne.” Stand­ing at the brink of a New Year, arms around each other, they ask: “Should old ac­quain­tance be for­got, and never brought to mind?”

The ques­tion is meant to be rhetor­i­cal, of course – the an­swer is “No.” The years may pass, but we should hold on to our friends.

For many older adults, how­ever, this ques­tion takes on a dif­fer­ent mean­ing, as they con­front the onset of de­men­tia in a friend. De­men­tia, which af­flicts an es­ti­mated 3.8 mil­lion peo­ple in the U.S. alone, af­fects cog­ni­tive abil­i­ties such as lan­guage and mem­ory that are of­ten un­der­stood as the nec­es­sary foun­da­tion for in­di­vid­ual iden­tity and hu­man per­son­hood.

As such, de­men­tia raises ques­tions about what are the bound­aries of the hu­man, what is re­quired to have mean­ing­ful so­cial re­la­tion­ships and more gen­er­ally what makes life worth liv­ing (or no longer worth liv­ing).

Re­search has long shown that feel­ings of lone­li­ness ac­com­pany the onset of de­men­tia. And re­search has sug­gested that so­cial in­ter­ac­tion is ben­e­fi­cial for the per­son with de­men­tia.

I re­cently con­ducted re­search that took these find­ings a step fur­ther. It ap­pears that the op­por­tu­ni­ties for per­sonal growth ex­ist not only for the peo­ple with de­men­tia but also for their friends.

A dreaded ill­ness, wors­ened by lone­li­ness-In the U.S., peo­ple with de­men­tia are of­ten rhetor­i­cally and metaphor­i­cally likened to zom­bies, and de­men­tia is of­ten de­scribed as a con­di­tion am­bigu­ously po­si­tioned between life and death.

Such ideas con­trib­ute greatly to the stigma, fear and shame that com­monly at­tend a di­ag­no­sis of de­men­tia.

And if de­men­tia is one of the most dreaded forms of de­cline as­so­ci­ated with ag­ing, it is also one of the most com­mon. The con­di­tion af­fects about 14 per­cent of peo­ple over age 71. The preva­lence of de­men­tia in­creases with age, ris­ing from about 5 per­cent among peo­ple in their 70s to 24 per­cent of those in their 80s – and of those who reach age 90, ap­prox­i­mately 40 per­cent are af­fected.

What is it like for peo­ple to ex­pe­ri­ence the onset of de­men­tia in a friend, and how do they re­spond? Close fam­ily mem­bers are of­ten ex­pected to step up to meet the chal­lenges of de­men­tia, and many try to do so. It is less clear, how­ever, what role friends can or should play. Lit­tle re­search has ad­dressed the topic.

I re­cently pub­lished an ar­ti­cle and a book chap­ter based on in­ter­views with in­di­vid­u­als who self-iden­tify as friends of some­one with de­men­tia (as well as some health care providers and fam­ily mem­bers).

The ba­sic idea be­hind this re­search is that there may be lessons to learn from those who have found both rea­sons and ways to main­tain re­la­tions of friend­ship af­ter the onset of de­men­tia – lessons that could be shared with others who find them­selves con­fronting sim­i­lar sit­u­a­tions. The friend who re­mains in a re­la­tion­ship with a friend who has de­men­tia may gain knowl­edge about the ill­ness and grow in un­ex­pected ways.

The re­search doc­u­ments how some peo­ple find value, in­ter­est, mean­ing and plea­sure in friend­ships with peo­ple who are liv­ing with de­men­tia. Among the find­ings, sev­eral stand out.

Through ex­pe­ri­ence, peo­ple gain spe­cific forms of knowl­edge about how to in­ter­act well with the per­son who has de­men­tia. How the con­di­tion af­fects peo­ple can vary enor­mously, and there is no in­struc­tion man­ual for in­ter­act­ing well with peo­ple who have de­men­tia. Still, some of the tech­niques and ap­proaches that these friends have de­vel­oped may be worth try­ing for others, as well.

Talk­ing about de­men­tia – in other words, mak­ing this some­times dif­fi­cult and un­com­fort­able topic “speak­able” – can be a crit­i­cal first step to­ward ap­proach­ing it col­lec­tively, as some­thing for a com­mu­nity to deal with in­stead of only as an in­di­vid­ual prob­lem.

Peo­ple I in­ter­viewed de­scribe friend­ship with the per­son who has de­men­tia as a re­la­tion­ship that is ca­pa­ble of chang­ing, rather than sim­ply en­dur­ing.

Peo­ple who have re­mained en­gaged as friends af­ter the onset of symp­toms de­scribe de­men­tia as an im­pe­tus for per­sonal and in­ter­per­sonal trans­for­ma­tions that can in­volve learn­ing, growth and un­ex­pected gifts – as well as sad­ness and loss.

Friends play im­por­tant role in wider sup­port cir­cle-How friends re­spond to de­men­tia is im­por­tant for a num­ber of rea­sons.

First and fore­most, friend­ships mat­ter to older adults with de­men­tia for all the same rea­sons that friend­ships mat­ter to any­one: They are sources of plea­sure, sup­port and so­cial iden­tity.

Sec­ond, the dif­fi­cul­ties and bur­dens faced by in­for­mal, un­paid care­givers of peo­ple with de­men­tia (mostly fe­male rel­a­tives) might be less over­whelm­ing if friends and other so­cial con­nec­tions re­mained more present in the lives of peo­ple with de­men­tia.

Third, there is a large and grow­ing num­ber of older adults with de­men­tia who – due to chang­ing pat­terns of marriage, child­birth, longevity, liv­ing ar­range­ments and ge­o­graphic mo­bil­ity – sim­ply do not have fam­ily mem­bers avail­able and will­ing to make med­i­cal de­ci­sions or step into care­giver roles. For them, how friends, neigh­bors, co-work­ers and others re­spond can be a mat­ter of life-and-death.

Light in the dark­ness

De­men­tia can seem like a fright­en­ing and de­press­ing topic, but this re­search gives rea­sons to feel hope­ful. While medicine has at present no cure and few ef­fec­tive treat­ments to of­fer, that does not mean that there is noth­ing we can do.

There is a lot we can do to make life bet­ter for older adults with de­men­tia. And we ought to do what we can – not only be­cause peo­ple with de­men­tia are fel­low mem­bers of our hu­man com­mu­nity, but also be­cause any one of us might find our­selves af­fected in the fu­ture.

One of the verses of “Auld Lang Syne” that is less of­ten sung by New Year’s rev­el­ers in­cludes the line: “We’ll take a cup of kind­ness yet, for Auld Lang Syne.” Help­ing peo­ple faced with the onset of de­men­tia in a friend learn from others how to fill, share and take sus­te­nance from that “cup of kind­ness” is one of the ways that an­thro­po­log­i­cal re­search strives to make the world a bit bet­ter place.

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