Break­ing down the stigma of Alzheimer’s

For World Alzheimer’s Month 2018, we’re look­ing into the stigma sur­round­ing the dis­ease and the peo­ple work­ing hard to break it down

Cotswold Life - - NEWS - WORDS: Ly­dia Tewkes­bury

Septem­ber is World Alzheimer’s Month, an an­nual event in which cam­paign­ers from around the world raise aware­ness and chal­lenge the stigma that sur­rounds the dis­ease. In the UK, a need for ed­u­ca­tion and mis­guided stereo­typ­ing and me­dia shock tac­tics all play a role in the stigma peo­ple liv­ing with de­men­tia ex­pe­ri­ence.

Though there is much work still to be done, there are or­gan­i­sa­tions work­ing hard on the ground to cre­ate a more in­clu­sive so­ci­ety. The Na­tional De­men­tia Ac­tion Al­liance (DAA) is one such group, com­prised of over 350 lo­cal al­liances around the coun­try who con­nect, share best prac­tice, and take ac­tion in their com­mu­ni­ties.

One lo­cal al­liance leader, Gina Awad, founder of the Ex­eter DAA in Devon, has re­cently been awarded with a Bri­tish Em­pire Medal in the Queen’s Birth­day Hon­ours List for her ef­forts to in­spire busi­nesses and or­gan­i­sa­tions to work to­wards a more de­men­tia friendly city. Gina, who be­came pas­sion­ate about de­men­tia care while study­ing for her BSC in Health and So­cial Care with the Open Univer­sity, started the al­liance to fill the gap in in­for­ma­tion trans­mis­sion between de­men­tia ser­vices and the peo­ple who need them. In­spired by her stud­ies, she started lead­ing the Alzheimer’s So­ci­ety’s De­men­tia Friend ses­sions, and it was dur­ing th­ese she re­alised that al­though there were re­sources avail­able to peo­ple, in­for­ma­tion about them wasn’t read­ily ac­ces­si­ble. Never one to rest on her lau­rels, she started look­ing for so­lu­tions to this com­mu­ni­ca­tion is­sue, dis­cov­ered the DAA and af­ter find­ing that Ex­eter didn’t have an al­liance of its own, built it from the ground up, on a vol­un­tary

ba­sis – though th­ese days has thank­fully se­cured tem­po­rary fund­ing to pay her for 14 hours a week, a frac­tion of the time she ac­tu­ally spends on the work.

In ad­di­tion to pro­vid­ing a vi­tal source of in­for­ma­tion, Gina is also on a mis­sion to com­bat stigma. ‘The way to re­duce that stigma is to talk about it. In­ter­est­ingly, be­cause de­men­tia re­lates to the brain and the mind, peo­ple are fright­ened of it as they are fright­ened of men­tal health,’ she says.

Peo­ple are of­ten fear­ful about shar­ing their di­ag­no­sis be­cause they don’t want to be judged and viewed as less of a per­son. Gina told me that she has met many peo­ple liv­ing with the dis­ease who shared with her that af­ter they told their friends about their di­ag­no­sis, many of them sim­ply stopped call­ing. Again, Gina puts this re­sponse down to fear. ‘It’s of­ten not be­cause the friends don’t care, but be­cause they don’t know how to deal with it. They au­to­mat­i­cally have this per­cep­tion through a lack of un­der­stand­ing and knowl­edge that if a per­son has a di­ag­no­sis of de­men­tia, what’s the point in see­ing them be­cause they won’t re­mem­ber who you are. There is so much more to de­men­tia than mem­ory loss.’ The fear sur­round­ing the con­di­tion leaves peo­ple too afraid to play a sup­port­ing role in their friend’s de­men­tia jour­ney, and leaves the per­son liv­ing with the dis­ease iso­lated – the worst sit­u­a­tion for their health and well­be­ing.

Me­dia rep­re­sen­ta­tion usu­ally doesn’t help. Gina em­pha­sised the im­por­tance of lan­guage and how it in­forms the tone of the de­men­tia con­ver­sa­tion. Where jour­nal­ists choose to de­scribe a per­son as ‘suf­fer­ing’ from de­men­tia, or re­fer to it as a ‘ter­ri­ble dis­ease’, it only serves to build fear, stunt­ing mean­ing­ful con­ver­sa­tion, fur­ther iso­lat­ing peo­ple liv­ing with it and even prevent­ing them from get­ting a di­ag­no­sis in the first place, and there­fore ac­cess to the right help and ther­a­peu­tic sup­port. Choos­ing lan­guage care­fully isn’t about ig­nor­ing the re­al­i­ties of the ill­ness, it’s about in­stead mak­ing clear that de­men­tia is more than sim­ply an end­ing – just ask any­one liv­ing with it.

It’s a vi­tal mes­sage, and one we can only spread by talk­ing about it and en­gag­ing with or­gan­i­sa­tions like the DAA, through which Gina has cre­ated pal­pa­ble cul­ture change in her city. In ad­di­tion to pro­vid­ing in­for­ma­tion, the Ex­eter DAA part­ners with lo­cal busi­nesses to em­power them to foster a more in­clu­sive cul­ture. Part­ners are asked to make pub­lic on the Ex­eter DAA’S web­site how they are work­ing to be bet­ter – per­haps by in­clud­ing De­men­tia Friend in­for­ma­tion ses­sions in ba­sic in­duc­tion for new em­ploy­ees, en­cour­ag­ing an em­ployee to lead within an or­gan­i­sa­tion and be­come a De­men­tia Cham­pion or ask­ing em­ploy­ees to wear their De­men­tia Friend badges at all times so they are clearly iden­ti­fi­able. Flex­i­ble ap­point­ment tim­ings and sig­nage are also con­sid­ered where ap­pro­pri­ate. It’s a tes­ta­ment to her progress that in the city where it was once hard to ob­tain or­gan­i­sa­tional buy in, busi­nesses are now keen to join the al­liance and con­trib­ute to this grow­ing so­cial ac­tion move­ment.

We have a long way to go, but cul­ture is grad­u­ally shift­ing to­ward in­clu­siv­ity.

‘The fear sur­round­ing the con­di­tion leaves peo­ple too afraid to play a sup­port­ing role in their friend’s de­men­tia jour­ney’

Gina Awad, founder of the Ex­eter DAA in Devon

Bar­bara Wind­sor re­vealed this year that she is liv­ing with Alzheimer’s

Newspapers in English

Newspapers from UK

© PressReader. All rights reserved.