independent

Sunday 25 February 2018

There for everyone

The North Louth Dementia Cafe opens its doors for its fourth season this month. Anne Campbell talks to Ann Marron about the important role it plays in carers' lives

HSE dementia case manager, Ann Marron.
HSE dementia case manager, Ann Marron.
Helen Rochford Brennan will be the guest speaker for the September gathering, which takes place at the River Cafe, Marshes Shopping Centre on Wednesday September 20.

When HSE dementia case manager Ann Marron, along with her Netwell Centre colleague, Lucia Carragher, first came up with the idea to start a 'dementia cafe' in Dundalk, they couldn't have envisaged the strength of the positive response from the community, both in North Louth and even further afield.

Those early events, back in 2014, attracted a small number of people who were living with and caring for those with dementia. But as word spread of the monthly get-togethers and the important information imparted at them, not to mention the support offered to those living with dementia, it quickly became a not-to-be-missed fixture on many calendars, taking place on the third Wednesday of each month.

The cafe was one of the first to open in Ireland and inspired similar ventures around the North East. And as the Netwell Dementia Cafe gets ready to start its fourth year, Ann is pleased to say that the hard work put into organising the speakers, the information sessions and the support networks plugged into the cafe are truly making a difference to the lives of those who attend.

And to kick start the new season, Ann has managed to secure Helen Rochford Brennan as the speaker for the September gathering, which takes place at the River Cafe, Marshes Shopping Centre on Wednesday September 20.

Helen has become well-known around Ireland and earlier this year, appeared on the Late Late Show to talk about how, while still in her fifties, she noticed she had difficulty finding words.

She was the operational manager for the Wheelchair Association and was very active in charitable initiatives. Married, with one son, Helen started to notice how she was forgetting tasks like collecting her son from sports training and she found it increasingly hard to empty out the in tray in her office.

She was referred by her GP to see a consultant in Dublin who diagnosed her with 'early onset Alzheimer's Disease'. And she admits how she drove back to her native Sligo that day, called into Knock and cried her eyes out to a priest there. Helen resigned from her work, dropped out of her charitable commitments and refused to leave the house because of the fear her diagnosis had instilled in her.

But, eventually, through the Alzheimer's Society of Ireland (ASI), she met up with Michelle Kelly, who introduced her to Cognitive Rehabilitation Therapy (CRT) and, since then, due to the positive impact of the therapy on her life, Helen now travels around the country, raising awareness of the benefits of early interventions.

Now aged in her sixties, and with the support of her husband, Sean, Helen addresses the loneliness and stigma attached to living with a dementing illness and the effects on family members.

Ann is very pleased that Helen has agreed to come to Dundalk this month to speak to those at the cafe about her experience. It is an isolating and difficult situation to be diagnosed with a dementia-related illness, and also to care for a loved one living with it.

There are an estimated 1,200 people in County Louth living with dementia. Ann said: 'The majority of these people live at home and are cared for by family, in most cases by an elderly spouse.

'But it's important to stress that dementia is not a normal part of ageing with only between five and eight percent of older people affected. However, increasing age is the single greatest risk factor for developing dementia and, as well all know, people are living longer now.

'We know that family care-giving to people with dementia is very intensive and very complex and family carers rarely receive adequate preparation for their role. Many family carers experience negative psychological effects, with some carers at higher risk of this than other, especially those who spend long hours looking after someone with advanced dementia and where the carer lives with the person.

'So, to respond to the meeds of families caring for someone with a dementing illness and to support dementia awareness in the community, Lucia Carragher and myself opened the Netwell Dementia Cafe in 2014.

'It is an information platform to support people with dementia, family carers, health professionals and anyone with an interest in dementia. In addition to providing an opportunity to socialise, it includes psychological education in the form of themed presentations, interviews and discussions about having and caring for a person with dementia. The Cafe, which we have purposely located out of a health or education environment, has a set routine structured around an annual programme of themed topics.

'These topics broadly follow the course of a dementing illness and explore issues relating to the emotional aspects of having dementia and caring for a person with dementia. This is usually done as a presentation or an interview with a relevant care professional, service provider or family carer.

'During the discussions in the Cafe, it is acknowledged that dementia can happen to anyone and the challenges associated with it include powerlessness, dislocation and distress. Our discussions also acknowledge that receiving support, meeting others and participating in life as much as possible is preferable to hiding away'.

At the Cafe, people can hear from others who are walking the same path as they are, following a diagnosis or caring for someone who has received a diagnosis. It is important, Ann says, for family carers to hear that they are not the only ones who feel they are on an emotional rollercoaster and find themselves sometimes struggling with the demands of caring for someone with dementia. And getting the proper information about the illness and the services available is vital, too.

The North Louth Dementia Cafe's first meeting takes place on Wednesday September 20 at the River Cafe, Marshes Shopping Centre from 6pm to 8pm and the speaker will be Helen Rochford Brennan. All are welcome to attend. You can speak to Ann confidentially, by calling her at 087 9369931.

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