De­men­tia

Many pa­tients want to be cared for in their own home but that can be chal­leng­ing for fam­i­lies

The Irish Times - Tuesday - Health - - Front Page - Peter McGuire

Phil’s wishes were al­ways clear: she wanted to be cared for in her own home. Back in 2014, when she first started to show signs of de­men­tia, her fam­ily de­cided to look af­ter her for as long as they could.

“I was try­ing to work full-time and look af­ter my own fam­ily, so a carer came in for about three or four hours a day to make sure she was eat­ing and to keep her stim­u­lated,” ex­plains her niece, Jenny Hughes.

“Phil is wi­d­owed and has no chil­dren of her own but has al­ways been so good to her nieces and neph­ews, so be­tween us we dropped into her in the evening time.

“Then, in 2016, we got a phone call from a so­cial worker to say that Phil had been found wan­der­ing and that she was giv­ing away her money, so we knew we needed full-time sup­port.”

Hughes ex­tended her con­tract with an agency called Care at Home to pro­vide full-time care, draw­ing on her aunt’s pen­sion and pay­ing some money her­self. Through the HSE’s home­care pack­age, she was given 21 hours of sup­port – the max­i­mum al­low­able amount.

Phil has lim­ited mo­bil­ity and her cog­ni­tive func­tions have de­clined fur­ther in re­cent years. The fam­ily are nearly out of money to pay for home­care, and their aunt has now gone into a nurs­ing home. “We love her and want to look af­ter her, but of course it can take its toll,” says Hughes.

Paula Maher is a reg­is­tered nurse as well as the founder and owner of the Care at Home agency. She says look­ing af­ter a loved one with de­men­tia can be very chal­leng­ing.

‘Vi­tal re­sources’

“Day­care cen­tres and the Alzheimer’s So­ci­ety pro­vide vi­tal re­sources, and many peo­ple em­ploy home­care agen­cies so they can get out for a few hours and have a break.

“Fam­ily mem­bers should al­ways take care of their own health first, be­cause when their own needs are met, it’s eas­ier to care for oth­ers.

“Ask for help and ac­cept it when of­fered.

Try to ex­er­cise: it pro­motes bet­ter sleep, re­duces stress and in­creases en­ergy lev­els.”

Get­ting home help shouldn’t be foisted on an older per­son, Maher ad­vises. “We’re of­ten ap­proached by peo­ple who tell us that their par­ent won’t en­ter­tain the idea of care, and ask if we will come talk to them. Forc­ing it doesn’t work; they have to con­sent to us com­ing in.”

Fam­ily mem­bers tak­ing on care re­spon­si­bil­i­ties need to know what they are do­ing: it can be dan­ger­ous, for in­stance, to try and lift an el­derly per­son af­ter a fall.

“If you can’t pick some­one off the floor,

call an am­bu­lance – they deal with thou­sands of such calls ev­ery year,” says Maher.

“Mo­bil­ity is al­most al­ways an is­sue as peo­ple age and it does dis­im­prove as de­men­tia pro­gresses. If mod­i­fi­ca­tions or adap­ta­tions are re­quired in the home, a com­mu­nity oc­cu­pa­tional ther­a­pist will ad­vise on these; grants are of­ten avail­able.”

Track­ing de­vices

Care agen­cies should al­ways as­sess a client’s mo­bil­ity and look at whether stair lifts, walk­ing frames, safety bars or other aids are needed.

There are some other steps fam­ily mem­bers can take. “De­men­tia bracelets with a track­ing de­vice are use­ful if some­one goes walk­a­bout,” says Maher.

“Don’t leave rugs or boxes on the floor that peo­ple can trip over. And don’t make too many changes in the home: fa­mil­iar­ity is im­por­tant for peo­ple with de­men­tia,” she adds.

The Alzheimer So­ci­ety of Ire­land pro­vides sup­port cour­ses aimed at sup­port­ing fam­ily mem­bers car­ing for a loved one with de­men­tia. Alzheimer.ie

PHO­TO­GRAPH: ALAN BETSON

Jenny Hughes (right) is the pri­mary carer for her el­derly aunt Phil Hughes (cen­tre), who has stage four vas­cu­lar de­men­tia, and also looks af­ter her mother who is in the ear­lier stages of the con­di­tion. Carer Karon Lam­mas (left) sup­ple­ments the care giv­ing.

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