Jillian van Turnhout (Independent) | Oireachtas source

I welcome the Minister. I thank my Labour Party colleagues for tabling the motion. It is great that there is harmony in the House as everyone welcomes the initiatives and strategies to deal with mental capacity legislation, dementia, Alzheimer's and positive ageing. I would like to move beyond words and explore ways we can make the issues before us tangible. We can all say these words but we all know action speaks louder than words.

I would like two issues to be fed into the national dementia strategy before it is published. First, expert opinion is that earlier and accurate diagnosis is important, as colleagues have said, for the individual but also for family members because of what such a diagnosis will deliver for them and it is imperative that coming out of the implementation of the strategy, resources will be put in place or reconfigured that will result in a nationwide health service, which provides timely diagnosis and provision for early intervention supports and services. A crucial component of this will be access to a uniform assessment of needs for both the patient and their carer. My understanding is that the HSE is piloting a single assessment tool, which will need to be such that it provides the necessary early indication of the onset of a dementia and acts as an early detection mechanism which leads on to the necessary follow up of interventions and support services.

Currently, the first port of call for most patients who present themselves to our health service with possible symptoms of a dementia is at GP level. Making a diagnosis of dementia is not easy and Irish research, including anecdotal evidence from my local GP, has shown that many GPs, like their counterparts in other countries, are reluctant to get involved in the area because of lack of confidence and training, stigma, difficulties differentiating normal ageing from the signs and symptoms of dementia and resource issues. There is a requirement, therefore, to ensure all health care officials at GP, primary care or residential care levels are skilled in the detection and diagnosis of dementia and are suitably equipped with the necessary people skills to handle the delivery of the diagnosis to patients and their families.

The second issue relates to community-based services. Following on from the early diagnosis of dementia and consistent with the Department of Health?s stated policy to shift the emphasis of care back into community settings, there is a need to ensure these settings are age and dementia friendly. Access to clinical dementia experts at local community levels will form the basis of key community services for those with dementia and their carers. People who need and receive community care, whether through home help, respite, home care packages, hospice and palliative care services, value these supports enormously. However, access is discretionary, unequal and problematic. The root of this issue is the lack of legislation to underpin access to these services. There is no statutory entitlement to home care and community care services. Since access is discretionary, it is extremely difficult for individuals, families and carers to get information and reliable access at critical points for example at discharge from hospital, onset of disability, diagnosis of dementia, long-term or life-limiting illness. I agree with the Ombudsman who observes that "people do not know where they stand in terms of their entitlements and in terms of the HSE?s obligations to provide services". I also support the call made by Older and Bolder for the inclusion, as part of a national dementia strategy, of the development of long-promised legislation to establish a clear right to community care. Only this can provide the clarity and security to individuals and families.

I stress that I welcome this motion and I recognise the Government?s achievements in this area such as the publication of the national carers strategy in 2012, which was broadly welcomed by carers groups as an aspirational document that provides a solid basis for informing future policy decisions. However, I also note the reaction from some groups I work with in the areas in question that a motion such as this is nothing more than a series of platitudes unless accompanied by action such as the tangible recognition of the vital work carried out by family carers. While 50,000 carers are responsible for Alzheimer's and dementia patients, 137,000 other carers look after other people with disabilities spanning all age groups from children to the elderly. Recognition of their work can be shown by the provision of adequate and ring-fenced resources, including payments to carers, which should not be seen as income supports but as direct supports for their caring duties.

We are all conscious that we are approaching budget 2013. The Minister for Social Protection recently gave us assurances that core benefits will be protected but we are still wondering what are core benefits? For example, is the half rate carers allowance a core benefit? I refer to the funding sources for carers, which include the Department of Social Protection, which covers benefits and allowance; the Department of the Environment, Community and Local Government, which administers the housing adaptation grant; and the Department of Health, which deals with hospital and respite care. When I consider this, I wonder whether the citizen or the Government is at the centre of policy, as he or she must constantly run around. He or she has to be assessed several times before a decision on his or her care and he or she must repeatedly go through his or her family history.

I wonder if we can reconfigure resources to put the patient and the carer at the centre, so that we do not waste resources.

Capacity legislation is mentioned and I support the idea of doing more. I advise the Minister to read the document prepared by 15 stakeholder organisations on essential principles of Irish legal capacity. Advanced care directives are legal in Ireland but do not enjoy statutory footing. It is important that people in an already disempowered position, facing dementia or the onset of Alzheimer's among many capacity diminishing conditions, are not further disempowered by uncertainty about whether their health care wishes will be respected. The Minister for Health provided an answer on 8 June to the effect that advanced care directives are not on a statutory footing. Can we get clarification from the Department of Health and the Department of Justice and Equality to work in a co-ordinated fashion to ensure a section on direct care directives will be inserted into the forthcoming capacity legislation?

I commend the community-based project of the Irish Hospice Foundation, Think Ahead, currently being piloted in Louth and Limerick. It encourages people to think about, discuss and record their preferences for future care. Advanced care directives are an issue we must talk about in Ireland.