Helen Rochford Brennan is from Tubbercurry in Co. Sligo. She is chair of the Irish Dementia Working Group and vice-chair of the European Working Group of People with Dementia. Helen was diagnosed with younger-onset Alzheimer’s at 61.
Helen speaks to Níall and Yeoryia about her life pre-Alzheimer’s, including a career in which she fulfilled demanding roles in enterprise and leadership across three different countries. She describes the devastation of her diagnosis and how it impacted her sense of self: ‘After losing [your] job, then you lose everything.’ She recalls her reticence in telling her family and friends about her illness, partly because of her own misconceptions about Alzheimer’s disease – misconceptions she feels are pervasive in our society. She illustrates these misperceptions by pointing out that when she books airport services to assist with her navigational difficulties; she is invariably presented with a wheelchair, despite her lack of physical disability: ‘it’s my brain that’s slow, not my feet’.
Helen’s despair was tempered only when a nurse suggested to her that, with her background, she should become involved in dementia research. She contacted Professor Ian Robertson at TCD and began cognitive rehabilitation. She felt brave enough to reveal her diagnosis to some friends, and was heartened by their supportive response. Emboldened, Helen began to speak openly about her Alzheimer’s, first among friends and family, then publicly, as an advocate. She feels frustrated by the isolation, invisibility and perceived inabilities of people with dementia, and makes the point that ‘we can still contribute’. [She addresses some of these points in a letter she wrote to herself, which you can find here]
Helen outlines some of the difficulties of her disease: ‘the pain of not being able to remember’ important conversations with friends and family; the dulling of certain emotions; the anxiety associated with trying to navigate unfamiliar, altered or overwhelming environments. Níall questions whether some of the ‘withdrawal from ordinary civic life’ associated with dementia exists because our cities aren’t designed to include the people affected. Helen agrees, and suggests improvements: she stresses the importance of noise reduction and good signage. She explains how she uses distinctive buildings to orientate herself and to assist in wayfinding.
Helen describes buildings she likes and which continue to work well for her as a person with dementia — for example, concert halls, which she describes as open and accessible, and which generally have effective signage and readily available assistance. She outlines how her perspective on certain spaces has changed: a store that she previously loved she now finds too noisy, too difficult to navigate.
Helen’s perspective on her home has also changed — an open-plan design that worked well before her diagnosis is now unsuited to her needs. Nonetheless, she advocates for facilitating people to stay at home (and out of residential care) for as long as possible, through tactical adaptations. She suggests that the most appropriate adaptations for an individual may not follow ‘best practice guidance’, neither practically nor in terms of aesthetic preference. She stresses the importance of simplifying the spatial organisation: of making things physically and visually accessible. However, Helen warns against excessive changes to a person’s familiar environment, and urges that the institutionalisation of the home should be resisted where possible.
Helen explains that dementia undermines the ability to plan for the future: ‘I can’t look at the future, because I don’t know what it’s going to hold for me … I had loads of plans for the future — all of the things my husband and I were going to do together — and those plans, they’re not there anymore.’ But she is ultimately determined: ‘I mustn’t give up, I have to keep going.’ She invokes the hopeful imagery of the rosebud, representing new life, and asserts: ‘I can at least try to realise some of [my] plans.’
Níall and Yeoryia met Helen in Dublin in January 2016