Prevalence and Costs

While there are limitations attached to arriving at dementia prevalence estimates, estimates of the current and future prevalence of dementia provide useful information for planning effective health and social care services and for raising awareness about dementia at a national level. Similarly, limitations arise with regard to estimating costs of dementia, but estimating such costs are equally important to inform national level decision-making around the (re)allocation of resources for dementia care. This section includes any papers that address general prevalence and costs associated with dementia, prevalence and costs in specific environments and the prevalence of other factors or situations associated with dementia.

A prospective 20‐year longitudinal follow‐up of dementia in persons with Down syndrome.

McCarron, M., McCallion, P., Reilly, E., Dunne, P., Carroll, R. and Mulryan, N.
Journal of Intellectual Disability Research
2017
This paper by McCarron et al. (2017) is based on a study following up 77 people with Down syndrome over a 20-year period. It reports that 97.4% of the group had developed dementia over the period, with a mean age of dementia diagnosis of 55 years.
The study reported risk for people with Down syndrome of developing dementia as follows: 23% at age 50, 45% at age 55 and 88% by age 65 years. The study also found high levels of epilepsy among the people with Down syndrome followed and all those with epilepsy had comorbid dementia. Other common comorbidities were depression, vision impairment and hearing impairments. Despite these comorbidities, the study shows that people with Down syndrome and dementia are living longer. The authors argue for the reorganisation of health and social care services, to be better equipped to care for this group of people.

Frailty: a costly phenomenon in caring for elders with cognitive impairment.

Butler, A., Gallagher, D., Gillespie, P., Crosby, L., Ryan, D., Lacey, L., Coen, R., O'Shea, E. and Lawlor, B.
International journal of geriatric psychiatry
2016
Butler et al. (2016) draw the reader’s attention to the costs of caring for people with dementia and the increasing pressure to define cost components.
115 cognitively impaired patients were assessed for frailly using the biological syndrome model to determine the role of frailty in relation to cost and resource utilisation. The authors found that frailty among patients with cognitive decline was strongly associated with daily informal care costs even when other risk factors such as dependence and co morbid illness are taken into account. They argue that this supports the consideration of frailty as a separate entity worthy of evaluation, suggesting that the development of frailty interventions have the potential to reduce costs.

Excess winter mortality associated with Alzheimer’s Disease and related dementias in the UK: a case for energy justice.

Liddell, C., Morris, C., Gray, B., Czerwinska, A. and Thomas, B.
Energy Research & Social Science
2016
In this paper Liddell et al. (2016) analyse excess winter mortality (EWD) for all of the UK, including Northern Ireland (NI), over a 22 year period. For over 25 years excess winter deaths have been shown to be particularly related to respiratory and circulatory system failure.
More recently the UK office for National Statistics reported a high level of excess winter deaths among those living with dementia with figures since winter 2009/10 indicating EWDs were twice as high as among those dying from a circulatory cause. The data suggest that these figures are not limited to those with vascular dementia. Figures in NI and Scotland show a steady increase in EWD’s, while England and Wales are more consistent. the authors suggest that the prevalence of EWDs among people with dementia indicates that prior to death they are living in levels of cold exceeding that within a normal thermal range, where their condition may mean they are less able to get warm, no longer have the same sensitivity to heat and cold and are unable to make adaptive choices to stay warm. They recommend further analysis to focus on where people are living before death and no investigation comorbid conditions at time of death.

Longitudinal costs of caring for people with Alzheimer's disease.

Gillespie, P., O’Shea, E., Cullinan, J., Buchanan, J., Bobula, J., Lacey, L., Gallagher, D., Mhaolain, A.N. and Lawlor, B.
International Psychogeriatrics
2015
Data from the Enhancing Care in Alzheimer’s study (ECAD) was analysed by Gillespie et al.(2015) to estimate resource use and cost of care for a sample of people with dementia and MCI living in the community.
Total informal and formal care costs rose from an average of €9,266 at baseline to €21,266 2 years later, with the increase in informal care being driven by an increase in care giver supervision hours. No significant difference was found in the cost of formal health and social care services. The authors suggest that as dependence increases, it is the families who step up to support the person. This may reflect existing resource constraints or a priority setting approach based on a reductionist philosophy; that if nothing can be done for the person, limited public resources might be better used elsewhere. The authors acknowledge the limitation of the sample size and that it did not examine data on those who had moved from the community to an institutional setting.

An economic analysis of a community-based model for dementia care in Ireland: a balance of care approach.

O'Shea, E. and Monaghan, C.
International Psychogeriatrics
2017
In this study O’Shea & Monaghan (2017) used a balance of care approach to examine the impact and cost of personalised support to people with dementia, regarded as being at the boundary between care in the community and residential care.
During the project 181 people with dementia received almost 35000 additional support hours. In terms of cost, community care was evidenced as lower remaining below 50% of residential costs even when personal consumption and housing cost were included. However, when informal caring costs were included using an opportunity cost methodology, community costs exceeded residential by approximately €200 per person per week. The authors highlight that their estimate of informal care costs may be exaggerated as a result of not providing an offsetting monetary valuation of the benefits of caring. They conclude that the provision of personalised support can delay admission to residential care and is good value for money.

Estimating the economic and social costs of dementia in Ireland

CONNOLLY, S., GILLESPIE, P., O'SHEA, E., CAHILL, S., PIERCE, M.
England)
2014

Connolly et al. (2014) using a cost of illness studies approach provide an estimate of the social and economic costs of dementia in ROI.

The total cost of dementia is estimated to be €1.69bn per annum, 48% of which can be attributed to costs of informal care provided by family and friends to people with dementia living in the community. Another 43% is attributed to long-stay residential care with only 9% of the total costs attributed to formal health and social care costs. The results are broadly in line with international studies. The study highlights the significant costs associated with dementia in ROI and the very heavy burden that falls on the family caregivers. 

The effects of dependence and function on costs of care for Alzheimer's disease and mild cognitive impairment in Ireland

GILLESPIE, P., O'SHEA, E., CULLINAN, J., LACEY, L., GALLAGHER, D., NI MHAOLAIN, A.
International journal of geriatric psychiatry
2012

Gillespie et al.

(2012) using data from the Enhancing Care in Alzheimer’s Disease (ECAD) study estimate the costs of formal and informal care for a sample of people with Alzheimer’s disease and amnestic and mild cognitive impairment (MCI) living in the community in ROI over a six month period. They then undertook a multivariate statistical analysis to explore the effects of dependence and function on costs of care.  They found that dependence and function of a person with dementia were both independently associated with the total cost of formal and informal care. As dependence on others increased, total costs increased. Conversely, an improvement in patient function led to a decline in the total cost of care. 

Informal cost of dementia care - a proxy-good valuation in Ireland

TRÉPEL, D.
Economic and Social Review
2011

Trepel (2011) focuses on the informal costs of dementia care and uses a proxy-good valuation method. Survey data gathered by the Alzheimer Society of Ireland to assess the dynamics of informal dementia care is used.

Data on minimum and maximum hours provided in informal care in early, mid and late stages of dementia are presented, to which a general replacement value is applied. The results show that dementia care places a substantial demand on informal carers, with costs increasing with dementia progression. The study highlights the high costs of replacing an informal carer full-time, and the importance of targeting interventions for carers to minimise carer burnout.    

Planning dementia services: new estimates of current and future prevalence rates of dementia for Ireland

PIERCE, M., CAHILL, S., O'SHEA, E
Irish Journal of Psychological Medicine
2013

Pierce et al. (2013) present estimates on the prevalence of dementia at a national and local level for ROI based on the application of European prevalence rates to Census of Population data for 2006.

Future projections of dementia were also calculated using population projections available from the Central Statistics Office. The estimates are that there were 41,740 people with dementia in ROI in 2006 and that the prevalence of dementia is expected to double over the next twenty years. Although there are limitations to such estimates, the data are useful for planning purposes and for awareness about dementia.