Sup­port to ‘live well

Ad­di­tional respite ser­vices and home-help hours are vi­tal to help those with the con­di­tion and their fam­i­lies

The Irish Times - Tuesday - Health - - Health | Dementia - Michelle McDon­agh

Liv­ing well with de­men­tia is pos­si­ble if the right sup­ports are in place, ac­cord­ing to Dr Karena Mee­han, head of the Later Life Psy­chi­a­try team in Gal­way West, but the re­al­ity is these sup­ports sim­ply do not ex­ist in this coun­try.

“We are good at di­ag­nos­ing de­men­tia and good in a cri­sis, it’s the bit in the mid­dle that’s not so good. There has been a lot of progress made in terms of aware­ness at pri­mary-care level and di­ag­no­sis,” Dr Mee­han says.

“And there has been a lot of progress made in the qual­ity of nurs­ing-home care com­pared to 15 or 20 years ago. It’s the bit in the mid­dle af­ter di­ag­no­sis, where the per­son is slip­ping a bit but not at the point of need­ing full-time care, that needs to be im­proved.”

There are an es­ti­mated 60,000 un­sung he­roes in Ire­land pro­vid­ing un­paid care to a fam­ily mem­ber or friend with de­men­tia liv­ing in the com­mu­nity. An es­ti­mated 55,000 peo­ple live with de­men­tia in Ire­land and the ma­jor­ity of these are liv­ing at home.

Car­ing for a per­son with de­men­tia, com­pared with other car­ing roles, places much greater de­mands and strain on fam­ily mem­bers, ac­cord­ing to re­search. Car­ers strug­gle to cope, some­times around the clock, with dis­tress­ing be­hav­iour such as repet­i­tive ques­tion­ing, sleep dis­tur­bance, and para­noia.

Dr Mee­han de­scribes car­ing for a per­son with de­men­tia as “a slow be­reave­ment” and points out that car­ers are at an in­creased risk of heart at­tack due to the im­mense stress of the role, and more than 50 per cent of those car­ing for a de­men­tia pa­tient at home have clin­i­cal de­pres­sion.

“We have nu­mer­ous cou­ples who are de­ter­mined to keep their hus­band or wife at home, at any cost. They of­ten try not to lean on their adult chil­dren and to pro­tect them from how bad things re­ally are.

“Respite care can make such a dif­fer­ence for these peo­ple, who are un­der un­re­lent­ing pressure 24/7 – get­ting a few hours off to meet a friend for cof­fee or get their hair done. Or if they know they have a few weeks of respite a year, they can plan to go abroad and see grand­chil­dren or book in for an op­er­a­tion or treat­ment them­selves.”

Know the per­son

Whether it’s respite or full-time care, Dr Mee­han stresses the im­por­tance for staff of get­ting to know the per­son be­hind the de­men­tia. What does she like to be called? What does he re­ally hate? Did they en­joy hurl­ing?

“If you feel com­fort­able, se­cure and val­ued, you can have a re­ally good qual­ity of life even with­out mem­ory and even if it’s not the same qual­ity of life as be­fore.

“We had one man who used to play in­ter­na­tional rugby so the fam­ily brought tapes of his games into the nurs­ing home and the staff got to know him as he was be­fore de­men­tia.

“There was an­other man who used to be a cy­clist so they brought a sta­tion­ary bike into his room and he cy­cled away on it ev­ery day. It’s about be­ing per­son-cen­tred.”

Tom McCann, de­men­tia nurse ad­viser for the Western Alzheimer’s Foun­da­tion, has a unique un­der­stand­ing of de­men­tia as he saw his own mother’s gen­tle per­son­al­ity change af­ter she was di­ag­nosed with the dis­ease. His fam­ily man­aged to keep her in her own home, but he ad­mits it wasn’t easy.

“You have to try and sep­a­rate the per­son from the per­son with de­men­tia. I had to tell my­self I was not deal­ing with my mother now, but my mother with de­men­tia.

“My mother was a mid­wife so we got her a doll – it was the best thing for her be­cause

Dr Karena Mee­han (right), head of the Later Life Psy­chi­a­try team, at Univer­sity Hospi­tal Gal­way. Above: a recre­ational area at UHG’s acute adult men­tal­health unit.

Newspapers in English

Newspapers from Ireland

© PressReader. All rights reserved.