SAN­DRA L BLOOD

blood­l­sandy@gmail.com

World Alzheimer’s Month is ob­served through­out the month of Sep­tem­ber. This year's theme The Ear­li­er You Know, the More You Can Do: A De­men­tia Di­ag­no­sis Mat­ters fo­cus­es on ear­ly di­ag­no­sis which will help guide care for the pa­tient and for the care­giv­er. In this Sun­day's WE Read, we ex­plore how a daugh­ter's ex­pe­ri­ence of car­ing for her moth­er shaped two books to help oth­ers fac­ing a sim­i­lar jour­ney.

When Dr Caron Leid was a young adult, even as a moth­er en­joy­ing and ad­mir­ing her moth­er’s strong, fo­cused and well-learned mind, nev­er did she en­vis­age a time would come when she would be­come con­cerned about what her moth­er was say­ing. While born in Eng­land to Trinida­di­an par­ents, her for­ma­tive years were in Trinidad and end­ed at Holy Name Con­vent, Port-of-Spain.

Leid said her moth­er, Mar­lene, was a reg­is­tered nurse at the Er­ic Williams Med­ical Sci­ences Com­plex in Mount Hope and was al­ways of sound mind, but dur­ing two joy­ous times in her life, some­thing changed.

“I was preg­nant with my son and my mom would call me and ask ‘when is the ba­by com­ing?’ I would say Au­gust, and she would ask this of­ten. I just thought she was ex­cit­ed be­cause she was com­ing up to vis­it me, and be­ing a reg­is­tered nurse would help me when he was born. But when she came up short­ly af­ter my son was born, I had to go to the gro­cery and I asked her to make a bot­tle for him, and when I came back home, I found out she didn’t di­lute the for­mu­la. I knew she wouldn’t make that mis­take and that some­thing was wrong. I then took her to the doc­tor, who gave her a mi­ni men­tal ex­am, Mo­CA (Mon­tre­al Cog­ni­tive As­sess­ment). Then he looked at me and said, ‘Your mom has ear­ly on­set Alzheimers and your life is go­ing to change.’ That was it... she was 57 and the year was 2000.” Leid said the di­ag­no­sis sparked her cu­rios­i­ty about the dis­ease and pro­pelled her not to be­come de­feat­ed. She even­tu­al­ly earned a PhD, an MBA, and a Bach­e­lor of Arts in Psy­chol­o­gy and So­ci­ol­o­gy.

Leid is cur­rent­ly a li­censed men­tal health pro­fes­sion­al, ed­u­ca­tor, re­searcher, au­thor, speak­er, and de­men­tia care con­sul­tant, mark­ing two-plus decades of lived and pro­fes­sion­al ex­pe­ri­ence sup­port­ing in­di­vid­u­als, fam­i­lies, care­givers, and or­gan­i­sa­tions, im­pec­ca­bly quan­ti­fy­ing her ex­per­tise in Alzheimer’s dis­ease and care­giv­ing, which be­gan long be­fore her doc­tor­al re­search.

“When my moth­er was di­ag­nosed with Alzheimer’s dis­ease at age 57, I found my­self nav­i­gat­ing care­giv­ing while rais­ing a child, build­ing a ca­reer, and pur­su­ing high­er ed­u­ca­tion. Twen­ty years there­after, she died, leav­ing me with an ex­pe­ri­ence that pro­found­ly shaped both my per­son­al and pro­fes­sion­al path. She came to live with me prompt­ly af­ter my fa­ther died in 2001.”

Leid’s doc­tor­al dis­ser­ta­tion fo­cused on the ex­pe­ri­ences of sand­wich gen­er­a­tion care­givers pro­vid­ing pal­lia­tive de­men­tia care in the home. Through this work, she de­vel­oped spe­cialised ex­per­tise in de­men­tia, care­giv­ing, care­giv­er bur­den, grief, fam­i­ly dy­nam­ics, and the long-term im­pact of care­giv­ing on fam­i­lies. She’s pre­sent­ed at in­ter­na­tion­al con­fer­ences on de­men­tia and care­giv­er-re­lat­ed top­ics, and mul­ti­ple books and med­ical jour­nal ar­ti­cles on Alzheimer’s dis­ease and care­giv­ing have been au­thored by her. Among them is the Trinidad & To­ba­go and Caribbean Edi­tion on Alzheimer’s.

She not­ed the in­creas­ing num­ber of di­ag­nosed peo­ple and the lim­it­ed in­for­ma­tion sur­round­ing the true dai­ly strug­gle of the dis­ease.

In­ten­tion­al­ly writ­ten for Caribbean fam­i­lies nav­i­gat­ing the dis­ease across T&T, Ja­maica, Bar­ba­dos, and the wider Cari­com re­gion, Leid au­thored the books Alzheimer’s - What They For­get to Tell You: Trinidad and To­ba­go, Caribbean Edi­tion A Per­son­al Jour­ney, launched in Trinidad in March 2026. The book is ded­i­cat­ed to her moth­er, Mar­lene, and in­cludes re­sources, con­text and guid­ance spe­cif­ic to the Caribbean health­care ex­pe­ri­ence. Alzheimer’s - What They For­get to Tell You: But I Will, launched in Trinidad on Au­gust 9; not a clin­i­cal med­ical man­u­al, but a book that re­veals the raw, un­fil­tered, emo­tion­al re­al­i­ty of care­giv­ing; hid­den, un­spo­ken emo­tion­al bur­dens of care­giv­ing.

Leid said the first edi­tion of A Per­son­al Jour­ney was writ­ten specif­i­cal­ly for fam­i­lies nav­i­gat­ing the Cana­di­an health­care sys­tem.

Through her doc­tor­al re­search ex­am­in­ing sand­wich gen­er­a­tion care­givers across Cana­da, T&T, and the Unit­ed States, she found that while the sys­tems are dif­fer­ent, the strug­gles of care­givers are uni­ver­sal, which led to the Caribbean Edi­tion specif­i­cal­ly cre­at­ed so that fam­i­lies across T&T and the wider Caribbean would ac­quire re­sources and con­text that re­flect their own health­care re­al­i­ty.

Leid has al­so served on par­ent en­gage­ment, re­search, and ad­vi­so­ry com­mit­tees fo­cus­ing on im­prov­ing health­care ex­pe­ri­ences and out­comes for par­ents, care­givers, and fam­i­lies. Apart from clin­i­cal work, ed­u­ca­tion, cur­ricu­lum de­vel­op­ment, pro­gramme de­sign, train­ing, fa­cil­i­ta­tion, and or­gan­i­sa­tion­al learn­ing have shaped her ex­pe­ri­ence. She’s al­so worked across health­care, com­mu­ni­ty ser­vices, and cor­po­rate en­vi­ron­ments, trans­lat­ing com­plex re­search and re­al-world ex­pe­ri­ences in­to prac­ti­cal strate­gies that in­di­vid­u­als, care­givers, health­care pro­fes­sion­als, and or­gan­i­sa­tions can im­me­di­ate­ly ap­ply.

Com­mit­ted to “help­ing peo­ple nav­i­gate com­plex chal­lenges with greater con­fi­dence, knowl­edge, and sup­port”, the books can be sourced na­tion­wide.