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

Cornwall Life - - INSIDE - WORDS: Ly­dia Tewkes­bury

World Alzheimer’s Month 2018

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, 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, work­ing in col­lab­o­ra­tion with other na­tional or­gan­i­sa­tions like Age UK as well as peo­ple liv­ing with de­men­tia and their car­ers to pro­mote best prac­tice, ed­u­cate and cam­paign for bet­ter un­der­stand­ing of the dis­ease. In ad­di­tion to work­ing on a na­tional scale, the DAA also op­er­ate lo­cally through en­cour­ag­ing the for­ma­tion of Lo­cal De­men­tia Ac­tion Al­liances (LDAAs) who com­mit to fos­ter­ing the val­ues of the DAA on a lo­cal level.

Each lo­cal branch is com­pletely in­de­pen­dent and unique, re­spond­ing to the needs of their par­tic­u­lar com­mu­nity – whether that’s a small vil­lage or an en­tire city. This might mean part­ner­ing with busi­nesses look­ing to be­come de­men­tia-friendly much like the na­tional Al­liance do, or it might func­tion more as a sign­post­ing re­source for lo­cal peo­ple with de­men­tia and their car­ers look­ing to ac­cess ser­vices and sup­port.

Both the DAA and its lo­cal branches also work on a va­ri­ety of aware­ness-rais­ing cam­paigns ded­i­cated to im­prov­ing the health and so­cial care out­comes for peo­ple with de­men­tia, but also the stigma they so of­ten face. De­spite the preva­lence of de­men­tia – the DAA’s web­site states that it cur­rently af­fects one in 14 peo­ple – the stigma around the dis­ease and the mis­con­cep­tions born from that con­tinue to be huge and mea­sure­able by those work­ing on the ground. Gina Awad, founder of the LDAA in Ex­eter, Devon, can at­test to this. In her work with her lo­cal al­liance she has met many peo­ple who feel iso­lated by the mis­con­cep­tions

sur­round­ing de­men­tia. It’s a prob­lem, she be­lieves, with only one so­lu­tion.

‘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 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

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

play a sup­port­ing role in their friend’s de­men­tia jour­ney, and leaves the per­son liv­ing with the dis­ease iso­lated – re­ally 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.

How we talk about de­men­tia in the me­dia and amongst our­selves in­flu­ences the per­cep­tion of it, but also how peo­ple liv­ing with it view them­selves. In a ef­fort to com­bat the lan­guage of neg­a­tiv­ity with which de­men­tia is de­scribed in the me­dia, the DAA, in part­ner­ship with the De­men­tia En­gage­ment and Em­pow­er­ment Project (DEEP) has pub­lished De­men­tia Words Mat­ter, a guide writ­ten by peo­ple with de­men­tia de­tail­ing the lan­guage choices that are hurt­ful to the com­mu­nity – a handy guide for jour­nal­ists and the gen­eral pub­lic on how to talk about de­men­tia in an ac­cu­rate and re­spect­ful way.

Stigma leads to sig­nif­i­cantly worse health out­comes for peo­ple liv­ing with de­men­tia, and it is the re­spon­si­bil­ity of com­mu­ni­ties to work to­gether in part­ner­ship with the DAA, en­gage in its cam­paigns and with the work of its lo­cal branches to cre­ate a de­men­ti­afriendly en­vi­ron­ment.

For more in­for­ma­tion about the DAA and to find (or start!) your lo­cal Al­liance visit de­men­ti­aac­

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

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