Special Report: Dementia in Ireland - Long way to go but first steps taken

It is important there’s clarity about options available so families can make good choices, writes Minister Kathleen Lynch.

Special Report: Dementia in Ireland - Long way to go but first steps taken

IT IS very common these days to hear discussions in the media and elsewhere about how much longer most of us can expect to live.

Babies being born today will live to average ages that would have been considered almost unthinkable for most people only a generation ago.

We must of course acknowledge that when more people live for longer, we will also have more of the conditions that are associated with old age, and unfortunately this includes dementia. It is estimated that there are approximately 50,000 people with dementia in Ireland today. These numbers are expected to increase to over 140,000 by 2040, as the number of older people in Ireland increases.

The Government has put in place the Irish National Dementia Strategy.

Living with dementia presents challenges for those with the condition and their families. The majority of people with dementia live at home. This requires supports and intervention.

Earlier diagnosis allows for better planning and managing of the condition. It is important that there is clarity about the options that are available so that families can make good choices in an informed way.

There is often a stigma associated with dementia which is largely based on stereotyping. As a community we must tackle this. We need to remember that when our loved ones develop dementia, they are still the people that we love.

The objective must be to allow them to live as well as they can for a long as they can. The National Dementia Strategy includes actions to change public awareness of what it means, and more importantly, what it doesn’t mean, to live with dementia. This knowledge must also be reflected in how services are planned and developed.

Important steps such as assigning clear and central responsibility for dementia within the HSE was one of the first actions taken. To this end, an office has been established within the HSE to lead the implementation of the strategy. Consolidating functions that were previously dispersed will have a very significant effect in generating and maintaining momentum and driving change.

A diagnosis of dementia is often accompanied by confusion and distress. Those affected and their families often don’t know where to turn. The overwhelming message from those affected was that the health service needed to provide clear information and guidance about next steps. For this reason GPs are a key focus of the strategy.

Providing and updating the information available to GPs is a key action in the strategy. This includes clinical information along with service information. Work to deliver this is underway.

Atlantic Philanthropies have very generously agreed to co-fund key elements of the strategy and this has transformed the timeline for implementation of key actions. A combined investment of €27.5m is committed over the period 2014-2017, with the HSE contributing €15.5m and Atlantic Philanthropies contributing €12m.

The initiative involves the rollout of a programme of Intensive Home Supports and Homecare packages for people with dementia. Secondly, it provides for additional dementia-specific resources for GPs who are, as I have already said, the initial point of contact with the health system.

GPs are critical to providing a good standard of care in the community for dementia sufferers. They know their history, their preferences and can uniquely treat their patients in a holistic way. GPs can continuously evaluate the changing care needs of those with dementia and the supports needed to allow people to remain at home for as long as possible. The GP programme is being led by Dr Tony Foley in Kinsale and training will be delivered throughout the country starting in October this year.

Thirdly, the strategy aims to raise public awareness, address stigma and promote the inclusion and involvement in society of those with dementia.

There will be robust monitoring, evaluation and accountability of the implementation of the strategy.

This will facilitate a strong evidence base to guide us in putting in place the most appropriate services .

As the country continues its recovery from economic collapse we should be able to scale up services based on the learning from the strategy’s implementation.

While we mostly focus on dementia among the over 65 years age group, it is estimated that 4,000 people aged under 65 are also living with younger onset dementia in our country.

Their needs are different to those of older people and our approach needs to recognise this. In recent times there has been more coverage of this in the media and there is now probably a better understanding of the condition among the general public. There is still a long journey ahead but we are taking the first steps.

We have no cure for most forms of dementia but we do know that it is possible for people with the condition to lead productive, fulfilling and happy lives often for a long time after a diagnosis. The aim of the strategy is to make life as good as possible for as long as possible for those affected by dementia and their families.

I am determined that this will be achieved.

Kathleen Lynch is the Minister responsible for mental health.

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