Northern Ireland

Northern Ireland Mortality Study

Queens University Belfast
The Northern Ireland Mortality Study (NIMS) is a large-scale data linkage study that links the 1991, 2001 and 2011 Census returns for the whole of the enumerated population (approximately 1.6 million individuals) to subsequently registered mortality data from the General Register Office (GRO).
While larger than NILS it is more limited in scope, focusing only on the linkage of mortality data. Data from this study features in one of the papers in the journal section of this review.

Northern Ireland Longitudinal Study

Queens University Belfast
The Northern Ireland Longitudinal Study (NILS) is a large-scale, representative data-linkage study created by linking data from the Northern Ireland Health Card Registration system to the 1981, 1991, 2001 and 2011 Census returns and to administrative data from other sources such as births, deaths an
d marriages. The result is a 30 year plus longitudinal data set which is regularly being updated. The sample is - c. 28% of the Northern Ireland population (approximately 500,000 individuals and accounting for approximately 50% of households). It is designed for statistics and research purposes only and is managed by Northern Ireland Statistics and Research Agency under Census legislation. The NILS offers the potential to look at a wide range of important social and epidemiological issues including occupational mortality; fertility change; family structure; women’s occupations; geographical and social inequalities in health; social mobility; and the health of ethnic minorities and religious groups. All research carried out on the NILS database must be related to health and social care.

Northern Ireland Life and Times Survey


The Northern Ireland Life and Times Survey records the attitudes, values and beliefs of over 1,200 adults in NI to a wide range of social policy issues. In 2010 a module on attitudes to dementia was included.

Full details of the survey can be found at and an overview of the results of the dementia module is included in the awareness section of the journal article review.

TUDA (The Trinity, University of Ulster and Department of Agriculture Study) Ageing Cohort Study

Joint Irish Nutri-Genomics Organisation

TUDA is a cross border research project. It gathers data on approximately 2,000 older people in NI and 3,000 in ROI, including people with cognitive impairment.

Detailed physical and cognitive assessments as well as biomarkers and genetic markers are carried out and it includes data on health of participants including anthropometric, bone, cognitive function, frailty, health & lifestyle and biochemical and genetic data.

Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA)

Queen’s University Belfast

NICOLA (Northern Ireland Cohort for the Longitudinal Study of Ageing) ( is NI’s longitudinal study of ageing.

The aim of NICOLA is to obtain information in relation to the experiences of ageing together with a range of other dimensions of lifestyle, health and socioeconomic circumstances. Recruitment for NICOLA began in early autumn 2013, when some 8,500 men and women aged 50 years and above were randomly selected from all over 50’s living in the community and invited to join the study.

Study participants are interviewed every two years, complete a health assessment every four years, and are followed-up for a period of at least 10 years. Information is captured on health and social care utilisation, health behaviours, medication, mental, physical and cognitive health, employment, finances, retirement, social connectedness, social participation, driving and travel, housing, consumption and expectations. Participants’ cardiovascular, cognitive and respiratory function is assessed as well as their physical activity, visual health and body composition. Biological samples provided by participants undergo detailed laboratory analysis, including genetic analysis.

Because NICOLA closely follows the approach taken by TILDA (ROI) and that of other longitudinal studies on ageing including ELSA (England), the establishment of NICOLA will provide an important evidence base for addressing current and emerging issues associated with population ageing across the island of Ireland. NICOLA has a special focus on intergenerational poverty, transition points in ageing and the effects of diet on the ageing process and includes questions of unique relevance to NI. NICOLA comprises an interview and a health assessment. The interview captures information on health and social care utilisation, health behaviours, medication, mental, physical and cognitive health, employment, finances, retirement, social connectedness, social participation, driving and travel, housing, consumption and expectations. The health assessment includes a review of cardiovascular, cognitive and respiratory function; physical activity, visual health and body composition. Participants are also to be asked to provide biological samples for detailed laboratory analysis, including genetic analysis.

Wave 1 interviews have now been completed with 8500 participants and a report on preliminary findings published:

Cruise, S. and Kee, F. (2017) Early key findings from a study of older people in Northern Ireland The NICOLA Study, Belfast, Queens University Belfast.

Wave 2 interviews began in 2017.

Living Matters, Dying Matters: A Palliative and End of Life Care Strategy for Adults in Northern Ireland

Dept. of Health, Social Services and Public Safety

This strategy identifies palliative and end of life care as a continuum of care that can evolve as a person’s condition progresses.

 The five year Strategy sets out a vision and direction for service planning and delivery, within the existing legal framework.  The strategy includes dementia among the chronic conditions considered and refers to the work already completed in “Dementia; NICE-SCIE Guideline on Supporting People with Dementia and their Carers in Health and Social Care” (NICE 2006). 

A Strategy to Improve the Lives of People with Disabilities 2012-2015

Office of the First Minister and Deputy First Minister

Addressing their responsibility to deliver the commitments in the United Nations Convention on the Rights of Persons with Disabilities this policy was also informed by the recommendations of the Promoting Social Inclusion (PSI) Working Group’s report on Disability.

The strategy addresses a series of cross cutting themes (e.g. participation and active citizenship, awareness raising, independent living/choice and control).

While dementia is not referred to specifically, the theme addressing transition from adulthood to later life recognises that many areas of public service do not distinguish between growing old and acquiring a disability and that the prevalence of disability in those aged between 60 and 74 is four times that in those aged between 26 and 44 (Northern Ireland Survey of people with Activity Limitations (NISALD)). The strategy argues that older people with disabilities should be supported in addressing their needs so that they have the same opportunities as older people who do not have a disability. 

Bamford Action Plan 2012-2015

Dept. of Health, Social Services and Public Safety

The Bamford Action Plan (2009-2011) was produced in response to the Bamford Review (2007) - an independent review of mental health and learning disability law, policy and service provision commissioned by the DHSSPS  This 2012-2015 plan carries forward the work of the earlier Bamford Action Plan, and in terms of dementia commits to continuing to improve dementia services in line with the dementia strategy in NI, with its emphasis on ensuring that people with dementia are treated with awareness and respect, especially by those providing services, and that they are supported to maintain their independence for as long as possible.

Transforming Your Care: A Review of Health and Social Care in Northern Ireland

Dept. of Health, Social Services and Public Safety

In December 2011 following an extensive consultation process the Minister for Health, Social Services and Public Safety published a report on the review of health and social care services.  This included a new model of care for NI based on 12 key principles:

  • Placing the individual at the centre of the model by promoting a better outcome for the service user, carer, and their family

  • Using outcomes and quality evidence to shape services

  • Providing the right care in the right place at the right time

  • Population-based planning of services

  • A focus on prevention and tackling inequalities

  • Integrated care – working together

  • Promoting independence and personalisation of care

  • Safeguarding the most vulnerable

  • Ensuring sustainability of service provision

  • Realising value for money

  • Maximising the use of technology

  • Incentivising innovation at a local level

Work continued after the report was published to develop implementation plans, including a further consultation process that resulted in the publication of: The Vision to Action Consultation Report.

The final strategic implementation plan was published in October 2013.

Active Ageing Strategy 2014-2020 – Consultation Document

Office of the First Minister and Deputy First Minister

NI’s ageing strategy, Ageing in an Inclusive Society, was published in 2005 and an active ageing strategy is currently being developed to replace the existing strategy. The purpose of the new strategy will be to transform attitudes to and services for older people.

When developed, it is intended to provide direction for Departments’ policies, make connections between a range of relevant Strategies and lead to the improvement of services for older people. As well as increasing the understanding of the issues affecting older people, the active ageing strategy is expected to facilitate a move away from an emphasis on needs, costs and burden of ageing to the promotion of rights, value and contribution of older people. NI’s national dementia strategy is referred to regularly in the consultation document. The consultation document has outlined five high level goals: independence, participation, care, self-fulfilment and dignity, all of which are significant goals for people with dementia. Feedback from The Active Ageing Strategy Consultation, which closed in May 2014, will inform the final version of the strategy due for publication in 2015. 


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