Commissioned research/evaluation

This report provides detailed estimates of the likely growth in the number of people with dementia over the next 20 to 30 years in Ireland. Dementia is closely associated with age - the older people get, the more likely they are to develop dementia and increasing age remains the single strongest risk factor for dementia. We know that the population of Ireland is ageing and so we are likely to have more people with dementia who will need support and services in the future. How many people will have dementia? Where will they be living? This report provides estimates by county and by age group so that we can be ready as a country and as local communities and plan to have appropriate supports and services in place. The data in this report informed the development of the National Dementia Strategy which is due to be published shortly.

Key findings

The increase in the number of people with dementia in the coming years will be significant and could be as high as 132,000 people by 2041, almost three times the current estimate of 47,000 in 2011. This increase undoubtedly presents a challenge to policy-makers and service planners but it also presents an opportunity to consider the services we currently provide for people with dementia and the adjustments that we will have to make to meet increased need in the future.

These estimates are based on Census data and population forecasts prepared by the Central Statistics Office. The population forecasts are used by all state agencies to plan services into the future. How many schools will we need? Where should we build our roads? It makes sense for the same numbers to be used in planning our health services into the future. The dementia prevalence rates applied to the Census data and population forecasts are based on combined data from several studies undertaken across Europe, given the fact that we do not have specific prevalence data for Ireland. Combining data from many countries allows the breakdown of prevalence by gender and age groups which is much more useful than one single prevalence figure.

Because they are estimates, we cannot know for sure how accurate these figures are, with some very recent studies suggesting that international dementia prevalence rates might be modestly lower now than previously thought.  But even if existing prevalence rates are an overestimate, the number of people with dementia in Ireland is still likely to at least double over the next thirty years. As estimates, the numbers should be treated with caution as a planning tool and neither reported sensationally nor ignored. But, given demographic ageing in Ireland, all the evidence points to a significant increase in the number of people with dementia in the coming decades. We must also remember that behind these figures exist the human faces of all those living with this illness, their family members and friends.

Assistive technology (AT) is something many people have heard of, but something few of us know about in any detail. In spite of the proliferation of technology in our everyday lives, there is a lack of knowledge as to how assistive technologies may support better quality of life for people with dementia and enable them to remain living in their own homes. The National Dementia Strategy recognises the potential of AT to be part of
a range of services which provide flexible support to people with dementia and their carers.

While AT has promising potential and many useful tools to offer, experience from sites in Ireland who are working with AT and findings from other studies indicate that the task of implementing AT is poorly understood and not very well developed in Ireland. While there is a general level of knowledge about AT, there were significant gaps in terms of understanding the main functions of the different types of technology and how technology is implemented on the ground.

This guidance document has been produced in order to address these gaps. The guide is structured around descriptions of products and services that support memory, safety, entertainment/reminiscence and communication. The information has been compiled into a clear and easily navigated guide with lots of practical tools for implementation and resources to access for further information. While the guidance is primarily aimed at front-line professionals working with people with dementia and their carers, the guidance contains a wealth of information in an easily accessible format so that it may also be of use to some people with dementia, family carers and others who are involved in supporting people with dementia.

This evaluation examined the impact of four Genio grant-aided initiatives which focussed on training and capacity building with families of people with disabilities, including people with very severe and complex disabilities. The overarching aim of the projects was to enable families of children with disabilities to envision a positive realistic future, and build better lives for themselves and their children within the context of their local communities. This research focussed on the impact of the initiatives on the family and the family member with a disability; the family member’s perspectives on the project content, processes, structures and sustainability of such initiatives. 

Context

In 2010, Genio grant-aided four family-focused projects with a focus on building capacity within families to promote and support the inclusion of their family member with a disability. The four projects were: 1) Family Focus Project - Brothers of Charity Clare with Muiriosa Foundation and Cheshire Ireland; 2) Transitions Project - DESSA (Disability Equality Specialist Support Agency); 3) Family Leadership Project - LEAP (Leading Education Advocacy and Planning for full citizenship for people with intellectual disabilities and autism) 4) Pathways to Possibilities Project - Autism Initiative Group. Genio commissioned Prof. Agnes Higgins of Trinity College Dublin to conduct an evaluation of these four projects. 

Key findings

• For the majority of participants the projects had a positive impact on the person attending, their family member and the family unit.
• The projects enhanced knowledge and skills of participants and challenged and changed their thinking about disability.
• The projects positively affected the participants ability to advocate for the rights of their family member and engage with services on a more equal footing.
• For some participants, the projects resulted in greater involvement and social connections of their family with community.
• Participants reported improved quality of life, self-esteem, and confidence for their family member as a result of their increased autonomy, independence, and involvement in decision making.
• In addition, the report contains a very useful overview of the literature on family support models which will be of benefit to any group seeking to develop supports for families of people with disabilities. The report also makes a series of recommendations which will inform Genio’s future work in this area.