Rachel Kelly
Writer, Mental Health Campaigner, Public Speaker

Reaching Out: The importance of connecting as a protective factor in the context of dementia and suicidal thoughts

De­lighted to share with you this guest blog by Nicola L.Wheel­er and Derek Fish­er.

Hav­ing had per­son­al ex­peri­ence of car­ing for a grandmoth­er who had de­men­tia, Nicola has furthered her in­terests in de­men­tia care through pro­fes­sion­al train­ing as a clin­ical psyc­holog­ist and work­ing with adults and older adults with de­men­tia di­ag­noses in the NHS. Nicola is par­ticular­ly in­teres­ted in group therapeutic op­por­tunit­ies for peo­ple with de­men­tia, and hav­ing trained as a sys­temic prac­tition­er, she values work­ing with car­ers, fami­ly and friends.

Derek Fish­er is a house man­ag­er for a char­ity that pro­vides shel­tered ac­commoda­tion for dis­ab­led peo­ple: al­low­ing them to live in­depen­dent­ly . Derek has had a keen in­terest in de­men­tia for the past 16 years and has wor­ked in soci­al care. Derek is in­vol­ved with the de­men­tia as­sis­tance card and has been from its in­cep­tion. He is also cam­paign­ing for a nation­al 24/7 de­men­tia helpline. Derek lives in Essex and his hobb­ies in­clude foot­ball, cric­ket, rea­d­ing and blogg­ing.

Al­though data re­lat­ing to suicidal­ity and de­men­tia is li­mited, it is general­ly acknow­ledged that soci­al with­draw­al and isola­tion, and lack of un­derstand­ing from oth­ers, are sig­nificant risk fac­tors for suicid­al thoughts and be­haviours in peo­ple who ex­peri­ence ment­al health dif­ficult­ies. Work­ing with peo­ple with de­men­tia, and their famil­ies, we have both en­coun­tered re­ports of suicid­al think­ing.

In re­cent years, there has been much in­vest­ment into rais­ing pub­lic awareness/un­derstand­ing of de­men­tia, in­clud­ing “Li­v­ing well with De­men­tia: a Nation­al De­men­tia Strategy”. Howev­er, stig­ma and negative think­ing con­tinues about de­men­tia, and ment­al health in gener­al. It is this negative societ­al con­text which may cloud or dominate the think­ing of a per­son with de­men­tia and lead to thoughts and be­liefs that life is not worth li­v­ing as ab­ilit­ies, and the per­son they are, will be lost as the il­l­ness pro­gres­ses, and in­creased care needs put strain on fami­ly and create feel­ings of guilt re­gard­ing how their il­l­ness af­fects those they love.

It is im­por­tant to re­cogn­ise there is life be­yond a di­ag­nosis of de­men­tia, as evi­den­ced by peo­ple who are “li­v­ing well” de­spite their de­men­tia di­ag­noses such as Chris Roberts, Chris­tine Bryd­en and Peter As­hley.

For many peo­ple and their famil­ies, an ac­curate and time­ly de­men­tia di­ag­nosis can be ex­treme­ly help­ful, as it helps make sense of th­ings which may have been a cause of frustra­tion; per­haps even ex­plain­ing why ar­gu­ments have been hap­pen­ing as mem­o­ry has begun to fail. To re­duce dis­tress and negative re­per­cuss­ions con­sequent to re­ceipt of a di­ag­nosis, it is im­por­tant that as­sess­ments are pre­ceded by sup­por­tive and in­for­mative pre-assessment co­un­sell­ing. This pro­vides space to con­sid­er what de­men­tia is, and the pros and cons of re­ceiv­ing a di­ag­nosis, therefore, en­sur­ing the per­son is giv­ing in­for­med con­sent to the as­sess­ment.

As pro­fes­sion­als, we re­cogn­ise that it is vital to in­vol­ve fami­ly in the di­ag­nostic pro­cess at the ear­liest op­por­tun­ity, per­haps through a fami­ly meet­ing to share the di­ag­nosis and think with them about ways for­ward, or through post-diagnostic psyc­hoeducation­al and pract­ical groups to create sup­por­tive new habits and routines.

Fear and lack of un­derstand­ing can re­sult in fami­ly and friends back­ing away so isolat­ing the per­son with de­men­tia and their carer. In­volv­ing, in­form­ing and skill­ing up fami­ly and friends helps pre­vent such dis­tanc­ing and pos­sible feel­ings of helpless­ness. Health and soci­al care pro­fes­sion­als, as well as Al­zheimer's Society De­men­tia Ad­visors and other such or­ganisa­tions, have a key role to play in pro­vid­ing in­for­ma­tion and en­sur­ing the applica­tion of this un­derstand­ing to en­able peo­ple with de­men­tia to live well. This con­nec­tion with, and un­derstand­ing from, pro­fes­sion­als, fami­ly, friends and oth­ers also helps pro­tect against co-morbid de­press­ion as the per­son re­cog­nises the sup­port and care avail­able to them.

Given how vital con­nect­ing with peo­ple and hav­ing oth­ers un­derstand and validate your ex­peri­ences is to well-being, a pro­tec­tive fac­tor for suicide pre­ven­tion amongst peo­ple with de­men­tia and their famil­ies is community-based in­itiatives which bring peo­ple togeth­er. These in­clude Alz or de­men­tia cafes, and therapy group sess­ions like mem­o­ry man­age­ment and cog­nitive stimula­tion. Peo­ple may be scept­ical about ac­cess­ing such sup­port for fear that they would not fit in, or that the con­tent of sess­ions is per­ceived as “too chil­dish” or “ir­relevant”, hence it is the job of fami­ly, friends and pro­fes­sion­als to say “don’t knock it until you've tried it for your­self”. These groups pro­vide space for shar­ing of know­ledge, ex­peri­ences and un­derstand­ing, but also facilitates de­velop­ment of new friendships with peo­ple who un­derstand de­men­tia and be­haviours that chal­lenge as unmet needs and, therefore, do not need ex­plana­tions.

Ac­cess­ing such groups and evidenced-based therap­ies also pro­vides the per­son with de­men­tia with approp­riate stimula­tion and have been found to be as ef­fective as medica­tion like donepezil­/aricept for slow­ing down the pro­gress­ion of de­men­tia. Medica­tion has a role to play also e.g. for en­hanc­ing cog­nitive func­tion­ing, man­ag­ing cardio-vascular risk fac­tors like high blood pre­ssure and high choles­terol, help­ing with mood or an­xiety, re­duc­ing de­lus­ions and hal­lucina­tions, and as a last re­sort for be­haviours that chal­lenge. Howev­er, medica­tion is not suit­able for all forms of de­men­tia, or all peo­ple, but such soci­al sup­port and therapy groups can and should be rea­di­ly ac­cessib­le.

Blogs are a good sour­ce of sup­port e.g. Al­zheimer’s Society’s Talk­ing Point, and soci­al media groups on Facebook and Twitt­er. Re­cog­nis­ing the value of talk­ing, the Al­zheimer's Society’s and De­men­tia UK’s telep­hone helplines can af­ford a li­feline at times of negativ­ity as the per­son on the end of the phone is not there to judge but to offer sup­port.

For other sour­ces of stimula­tion and sup­port, we rea­di­ly ad­vocate use of tab­lets/iPads and the wide range of apps avail­able to meet in­dividu­als’ per­son­al tas­tes/in­terests e.g. quiz­zes, brain train­ing, games, mindful­ness. Other apps can sup­port learn­ing new routines and con­trol as­sis­tive tech­nology.

Meaning­ful con­nec­tion with music is a power­ful therapeutic tool, es­pecial­ly for peo­ple with ad­vanced de­men­tia as Naomi Feil de­monstrates in YouTube videos of her work with Gladys Wil­son. Music can be stimulat­ing but also sooth­ing.

In sum­ma­ry, we hope that the ideas in this blog will help peo­ple, and their family/friends, to ac­cept their de­men­tia di­ag­nosis, con­sid­er ways for­ward to over­come dark or negative thoughts, and re­cogn­ise that there is the capac­ity to live well. It is per­tinent to re­memb­er that ac­cess­ing meaning­ful stimulation­/occupa­tion, and main­tain­ing a role or sense of pur­pose for the per­son with de­men­tia for as long as pos­sible is vital for opt­im­al well-being, as we all want to feel valued and needed.