Speech at the Symposium on Human Rights and Dementia in Trinity College Dublin, 8th November 2019

Thank you for inviting me to speak at this important and timely event putting people’s experience of dementia in the context of people’s human rights

The title of my address in the programme is “The Politics of Dementia Care: The Personal is Political”, and its that thread that I will follow

Official figures that you will all be familiar with are that there are an estimated 55,000 people with dementia in Ireland. In the absence of a registry, which I know is on its way, these are the best estimates we have.

Worldwide there is an estimated 50 million people with dementia with these figures due to triple over the next 30 years.

That’s an awful lot and a growing number of people globally and here at home.

Hands up here if you know or are related to a person with dementia. Almost every person in this room

And let us remind ourselves that we are speaking here about people who are citizens here. Citizens with rights. Citizens who just happen to have dementia

When I worked at the Alzheimer Society of Ireland I was privileged to launch with former president Mary Robinson and with Dr Helen Rochford Brennan the Charter of Rights for People with Dementia

These set out rights to

participate – accessible information, supports to exercise will and preference, to go out and about

accountability– particularly on the part of providers when people are in the care of others

non-discrimination and equality – to be free from discrimination. I know of people fearful of sacking because of the diagnosis of dementia or an architect refused insurance to practice

empowerment – to be supported to be independent, to be supported by people who have appropriate training on dementia, to access opportunities in community and for lifelong learning

legality – to be supported to make the decisions that affect us. The full commencement of the Assisted Decision Making Act is long, long overdue.

Most of us would sign up to these and almost think these rights set out in the charter are obvious, are minimum. Yet how often they are breeched or compromised, by omission or commission.

I clearly remember the day of the launch of the Charter. And on that very same day having in my bag a less than glowing HIQA report on setting I was ultimately responsible for. A setting which was falling short of guaranteeing the kinds of care and supports which made good, made real the rights so rightfully set out in the Charter

So, rights for citizens with dementia are relatively easy to set out and agree on. Much, much harder to make real in the everyday. To walk the walk as well as talking the talk

Dementia something kept behind the closed doors of centres or even in families.

Too often, it is something which is a source of stigma, a private trouble, if you will. And the HSE Understand Together campaign is to be commended for its work in breaking down barriers and beginning the conversation about dementia

But we need to go further than ‘having the conversation’ and reflect on CW Mills observation in the Sociological Imagination that all private troubles, including the experience of dementia, are public issues. Personal matters belong in the public sphere and require a public response, if the citizen with dementia is to have her or his rights vindicated.

Dementia is a private matter. It is also a political matter. That is why one of the first things I did when I was nominated to Seanad Eireann was to establish the All Party Oireachtas Group on Dementia. It is a very activist group with members from across the political spectrum and its co convenor with me is Mary Butler TD, the Fianna Fail spokesperson for Older People. The Alzheimer Society of Ireland is the secretariat

The premise of All Party Oireachtas Group is that dementia is a political issue but not a party-political issue.

We, the members from all parties and none, believe

that dementia is a serious health and social issue which needs to be taken seriously by the political system, by Government, Department and Agencies.

That people with dementia can and should live well with the condition, in their own homes and communities as people with dementia prefer, and as the condition changes and progresses

That today in Ireland people with dementia and their carers are struggling

That people with dementia have a rightful call on the public purse to live well and vindicate and make real their rights.

There is widespread support for the work of the All Party Oireachtas Group on Dementia, we pack out the AV room for Dementia Awareness Sessions on a regular basis. And to date our demands, rightly or wrongly have been to my mind modest, maybe too modest.

Modest too is the current National Dementia Strategy. Far far too modest and not adequate to the task of guaranteeing people with dementia in Ireland their human rights, their human dignity, throughout their dementia journey. The National Dementia Strategy as it stands is something but really ‘only a foot’ in the door as are the modest ‘asks’ from All Party Oireachtas Group on Dementia in successive budgets.

And yes, last month, after blood, after sweat, after tears, and so much frustration and believe me I know, there was a modest promise of 10 extra Dementia Advisers in budget 2020. But we really need a network of 90 to have a Dementia Adviser for every primary care network. It was something I suppose. Mary Butler and I were very convinced of their merit following a study visit to Scotland in January 2017, where we met arrange of people including the Minister. So the All Party Oireachtas Group focused on Dementia Advisers. We truly thought incremental progress to a national network of Dementia Advisers would it be an “easy” win whilst we worked on the other major, harder planks of support needed to underpin the human rights of people with dementia in Ireland today.

My husband had a bad fall from a bike last year. He needed major surgery, lots of care, rest, physio and yes bandages and dressings too. To me the National Dementia Strategy and the announcement of 10 Dementia Advisers last month are like bandages and dressings. Something for sure but not the real interventions necessary guaranteeing that people with dementia, up and down Ireland, in cities and in the country, can live well with dementia, whatever the age, whatever the stage.

So today you will have heard form me and others what we need to do to get real, get political about dementia.

Homecare is essential and would be transformative. Some of you will remember the very promising roundtable with the then Minister Helen McEntee in March 2017 but progress has stalled and stalled badly on homecare.  A national infrastructure of homecare didn’t feature in Project 2040. But it should be as important as roads, railways and broadband. Matched with the serious investment needed to put it in place and maintain it. We have had consultations on homecare, we have had research on homecare, we have had policy development on homecare, we have seen an uplift in home help hours (not homecare by the way), but we are no closer to having a national infrastructure of homecare, like is in place and afforded in other small countries like ours, like Denmark, where the shift from institutional care has been made. No new nursing homes built since 1897. Instead close care, homecare and a small residential sector.

We are not closer to a ‘fair deal’ for homecare either.

To my knowledge there has been no government led strategy on Assistive Technology, bringing together research and industry, underpinned by Government Investment. Assistive Technology is potentially so transformative. Drug technology doesn’t seem to be delivering the magic cure. We need to get serious about how Assistive Technology can transform the lives of people with dementia, help them to live independently and take care that it is indeed ‘assistive’ and not surveillance.

We need to build community supports and bring them into the 21st century. I was appalled when visiting a day service that the colouring sheets were for children rather than the lovely mindful adult sheets and books we can get now.

We need to reach out to and connect with people with down syndrome who develop dementia in greater numbers and at an earlier age, people falling between systems of disability and older people. We also need to recognise that people get dementia before they are 65, and who also are entitled to supports

But as campaigners for change will know all these things and more…. a fit for purpose National Dementia Strategy, a national network of Dementia Advisers, Homecare, Assistive Technology, supports for younger people and people with down syndrome and dementia…. none of these will come easy. None will be given on a plate….

So, if we want these things to come to pass, we must get noisy, the meek may inherit the earth but will not force the changes and transformations that people with dementia need to vindicate their human rights

Dementia is a private trouble, a personal matter, a public issue and is and will always be ‘political’

There are a few opportunities coming up that must be grasped. Dementia should be a key focus in the upcoming Citizen’s Assembly on care and Dementia must be made an election issue in party manifestos and on the door steps.

So, people get ready. There is much work to do and I am glad to be in it with you, through the All Party Oireachtas Group and other channels, speaking up and speaking out for the better day that people with dementia and their carers deserve and have a right to.