Policy and legislation

In this section you can expect to find articles that address legal issues in dementia, articles that comment on any relationship between research and policy or legislation, or articles that might assess the impact of policy or legislation on the experience of dementia.

“We don’t have the infrastructure to support them at home”: How health system inadequacies impact on long-term care admissions of people with dementia.

Donnelly, N.A., Humphries, N., Hickey, A. and Doyle, F.
Health Policy
This qualitative study examined the role of Irish healthcare system factors on the admission of people with dementia to long term care. Community care services were evidenced to be under resourced and inequitable.
Examples included a lack of continuity of care in the community and considerable differences in access to services based on geographical location. The constraint in community services creates a situation where in the absence of adequate support, even for a short term crisis, families are forced to consider admitting their loved one to hospital. A further complicating factor is that in the face of lengthy waiting lists for community services, health and social care professionals will sometimes advsie a family to admit the person with dementia to hospital as a way to speed up access to services. When someone is admitted to acute care, this is seen to accelerate admission to long term care with people with dementia reprorted to often deteriorate during their stay. It is also often at this point that health care professionals take the lead in decision making and control moves away from the family. Irish government policy advocates supporitng people to live well in their own homes for as long as possible but the authors suggest current indaequacies in the system, that were exacerbated by the economic crisis, have resulted in community services that fail to meet policy objectives.

Trends in diagnosis and treatment for people with dementia in the UK from 2005 to 2015: a longitudinal retrospective cohort study.

Donegan, K., Fox, N., Black, N., Livingston, G., Banerjee, S. and Burns, A.
The Lancet Public Health
In this longitudinal study Donegan et al.(2017) explore the impact of policy on dementia diagnosis and treatment between 2005 and 2015 and describe changes in the proportion of people diagnosed with dementia and the pharmacological treatments prescribed in the same period.
Across the UK there was a significant increase in the number of people diagnosed, with figures in Northern Ireland and Scotland being consistently higher, altough more recent figures indicate an upward trend for England and Wales. Prescription rates for anti-dementia drugs have increased with rates being consistently higher in Northern Ireland. This increase began before the release of the National Strategy n 2009 and was continuing to rise at the end of 2015. The general increase across the UK may be in part related to a change in NICE guidelines giving people with mild dementia access to these drugs. Prescription of anti-psychotic drugs significantly decreased from 22.1% in 2005 to 11.4% in 2015. The authors highlight the potential impact of 2004 guidance from the Committee on Safety of Medicines and the Time for Change Report 2009. While acknowledging that this study can not confidently link any changes to specific initiatives, the authors suggest that national initiatives appear to have had a positive impact.

Personhood, dementia policy and the Irish National Dementia Strategy

Hennelly, N. and O’Shea, E.
Dementia: The International Journal for Research and Practice
Hennelly and O’Shea (2017) examine the extent to which personhood forms part of the policy narrative in Ireland.
It concentrates on the content of submissions made by stakeholders, individuals and organisations, as part of the consultation process for the developmentment of the Irish National Dementia Strategy and the content of the National Dementia Strategy itself. Using content analysis, the article reports on the number of direct references to personhood and personhood synonyms in the organisational submissions and in the Strategy and its priority areas of action. It categorises the organisations submissions into one of three models: biomedical, psychosocial and social and cross-references these models with regard to the explicit use of personhood or one of its synonyms. It found that the use of personhood and its synonyms correlates highly with submissions categorised as falling within a social model. It discusses the findings and whether the principle of personhood in the strategy is a sufficient condition for changing dementia care in Ireland.

Sexuality and Dementia: Law, Policy and Practice


Lennox and Davidson (2013) identify areas of law, policy and practice in NI that could be improved to manage sexuality and dementia, particularly in care home settings.

 They highlight the difficulties of establishing capacity and consent and the need for more open discussion, debate and research in this area.  A particular gap identified in research is the lack of service user perspectives.  They conclude that staff must be better informed on legislation and policy and must receive better training and support on effectively managing sexuality and dementia.  

Legal implications regarding self-neglecting community-dwelling adults: a practical approach for the community nurse in Ireland

Public Health Nursing (Boston, Mass.)

Ballard (2010) examines the legal implications for nurses working in the community when they encounter clients who are believed to be self-neglecting.  The paper examines the literature and reports on a case study where the client had dementia.

 Ballard highlights the complexity of capacity and competency, mandatory or discretionary reporting, trespass, homelessness and confidentiality concluding that it is often unclear where the community nurse’s legal responsibilities lie.

Older people and legal advice - the need for joined up and creative approaches

Journal of Social Welfare and Family Law

Duffy et al. (2012) use a mixed methods approach to examine the potential of the Internet as a source of legal advice and information for older people.

 While the paper is not about people with dementia it highlights the need for timely, legal advice on diagnosis of dementia and the impact on carers who are often exhausted and do not have the energy to pursue legal issues.