Rónán Mullen (Independent) | Oireachtas source

Cuirim fáilte roimh an Aire Stáit. The Minister of State is very welcome. I apologise in advance for the fact that I will not be able to stay to hear her response, but I will certainly read it later, because this is an important debate. I compliment all who have been responsible for bringing it to the floor today, including Senator O'Loughlin and her committee, which I commend for its important work, and the organisations and people who advocate on the issue of brain health for people with dementia, in particular, the Alzheimer Society of Ireland and champions, such as Helen Rochford-Brennan, who have been mentioned and rightly so. I pay tribute to their important work in growing awareness.

I can remember when I started thinking about this issue properly a number of years ago. The figure at the time was 50,000 people and I remember it being said that the figure would grow to 150,000 within a couple of decades. We all know why that is the case, or at least we know some of the reasons, such as the fact that people are living longer, and the population and demographic trends make that inevitable to a degree. However, it is interesting that the figure is no longer 50,000. Now we are in the 60,000s and we are talking about an increase of 11,000 a year in the number of people getting a diagnosis or living with dementia of one kind or another. That highlights the importance of this issue, not just for those who might be affected, by that I include those who are living with and caring for persons living with dementia, but for wider society. This includes everything from health budgets to the care demands being made on society as a whole, and the loss of opportunity in terms of the talent and the ability a person loses to contribute to the working world when he or she is affected by a diagnosis. It is very important that we as a society recognise what remains. What remains is a person with real dignity and, in the words of Professor Des O’Neill, who has done wonderful work in the area of gerontological care, the inner life of the person.I sometimes think that we talk too much about our personal experiences as politicians when it comes to these kinds of debates. On the one hand, we are conscious of how these issues connect us with others when we have that experience ourselves but we are all tempted as politicians to engage in personal discussion to an extent that sometimes could border on narcissism. That is a temptation we all have to resist.

Nonetheless, in my own experience of being part of a family caring for my father through his near decade of dementia, I learned an awful lot. I learned a lot about my own capacity to make mistakes, to fail to recognise my father's inner life, perhaps my own fears and unwillingness to accept the limitations that had come into his life and, by definition, into our relationship with him. I am also glad to say that I learned, as I think we did as a family, how to love my father more in a way that I had not learned throughout our life up to that point and we had a good family relationship.

In reflecting on what people like Professor Des O'Neill have to say about respecting the inner life of the person or in other words, respecting the person's capacity to express their will, desire and needs even at a point where we think they are no longer capable of making those kinds of decisions is a real challenge. We see that in our advanced-care related legislation that we are moving from a rigid ward-based model of dealing with a person to a situation where you assess the person in his or her individuality and needs and the kind of assistance he or she needs with decision-making and at what point and what decisions. You are dealing with a much more kaleidoscopic picture. I think that applies when we think of dementia and how we care for persons with dementia. I still have moments when I find myself worrying whether I was too interventionist. Was I too much of a dictator in the way that I cared for my dad? I even worry about the way I was feeding him on the day he died. Because there were times when you just had to make decisions because it was what good care required. Yet even in those moments you found yourself wondering "am I dealing with my own impatience today? Am I dealing with my own frustration today?" rather than what my father would have needed in that situation. There is a real need to always be ready to learn; to learn to shut up, to not just contradict or bring the facts when something mistaken or erroneous is said. At the same time you have to forgive yourself for the moments when you are just human and you fail to be as patient or selfless as you ought to be. And you must also recognise that there are moments where you have to make the best decision you can in the circumstances. We have learned a great deal about moving away from coercive care to that more reflective approach. That is really important.

It is also really important for society that we think about how we think about dementia, as well as frailty and dependency of other kinds. It intersects with that very difficult debate around euthanasia and assisted suicide, which comes up from time to time. Very often those debates start out from a place of fear where we, in the whole of our health, say "I would hate to be in this situation". I think what we learn when it comes to palliative care, and I was involved in doing a report for the Council of Europe on that, and dealing with dementia, we need to learn to not presume about how things might be in the future. Through accompanying those affected, we can perhaps learn something about our own future frailty and how we would like to be able to cope with it ourselves. I saw with my father, that he would not have liked to think in advance about the level of dependency he was going to have on his family and loved ones in the future in their giving of intimate care and so on. Yet, as I can say looking back, as I would have said on the day of his funeral, that many people looking in from the outside would say that it is a terrible affliction and even that can be stigmatising. It can be very difficult where there is change in personality and where there is anger and all sorts of things where you just have to say "this is not the person I love. It is not them". We have to try and understand that. Nevertheless, there are also moments of laughter and joy. There was tremendous consolation for us in the fact that we worked to keep our dad as happy on the outside as he appeared to be on the inside. In that way, we had it very good. We also received great support from the State and from the Alzheimer Society of Ireland. It may be uneven across the country, and there may be patchiness that needs to be addressed, but there are other areas where people are dependent with sickness or other kinds of disability where the services might not be as good or available. We have to be open to that.

We must never presume too much about what it is like. We must work to grow in our understanding but to always recognise that there continues to be that dignity in the person in ageing and where dementia is. There is dependency but there is also dignity. There is also an inner life and a need to respect that inner life that continues, that is not over.