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P14. Care costs and care financing

Detailed programme and abstracts

P14. Care costs and care financing (Wednesday 2 Nov., 8.30 - 10.00)

P14.1. Making ends meet, a financial assistance program lessens the financial impact on family caregivers of people with dementia and other illnesses.

MCKAY Kristy

Background: In Canada, one in five people aged 45 and older provide care to seniors living with long-term health problems. The financial impact on caregivers and the economy is enormous. In 2011, family caregivers of people with dementia provided 444 million hours of unpaid care, resulting in $11 billion in lost income.  Since 2012, The Caregiver Project has worked to lessen this impact by providing $2.5 million dollars in grants to over 1500 family caregivers in Toronto, Ontario. The Caregiver Project is funded by the Provincial government and Alzheimer Society Toronto (AST).

Methods: Caregivers complete applications with designated care coordinators, or AST Social Workers. Problem Solving Therapy is used to create a self directed care plan that includes access to small grants.   Caregivers use grants to purchase traditional and non traditional support services like in home care, medical supplies, and funds for family vacations or social activities.  Caregivers may also access AST services such as, counselling, support groups, and education. AST Project Coordinators support caregivers in achieving care plan goals.

Results: Caregivers are surveyed one month and six months after care plan implementation.  Qualitative data indicates a high level of caregiver relief, satisfaction and improvement in quality of life for both care giver and care recipient.  Caregivers routinely report significant delays in long term care placement.  Quantitative data shows an increase in caregiver satisfaction with the program from 8.5 to 9.2 out of 10. Caregivers self reported stress levels showed a slight increase from 4.2 to 4.4 out of 10.

Conclusions: Caregivers and recipients receive vital care and support that would otherwise be inaccessible.  This program has been sustainable for five years through government funding and private donations. 

P14.2. CAREGIVERSPRO-MMD: A European platform to support people living with dementia and their caregivers


Due to the increasing number of people living with dementia (PwD) and to the high cost of care, low cost effective methods have been developed to reduce the financial cost and to improve the quality of life for both PwD and their caregivers. Research evidence suggests a positive effect of web-based interventions for PwD. Therefore, we introduce a new web-based platform designed to improve PwD and caregivers’ quality of life, social interaction, wellbeing and treatment adherence called CAREGIVERSPRO-MDD. The web platform is designed for PwD at mild or moderate stages, and for people with mild cognitive impairment, and their caregivers, who will interact with other people through the platform. This intervention is based on the dyadic relationship between PwD and their caregivers as a team for achieving specific goals, such as improving treatment adherence or delay institutionalization. Moreover, the platform will provide information about localized sources to obtain help, support and educational material. Finally, the platform has the potential to provide a way to health professionals to follow up patients and caregivers at home. Different versions of the platform will be created for each of the four European sites of the project: United Kingdom, France, Italy, and Spain. The platform has been developed through different stages, including PACT analysis (People, Activities, Context, and Technologies), focus groups and semi-structured interviews with dementia care professionals, PwD and caregivers. Further improvements will be performed on the platform after the first months of the pilot. The platform will be publically available for its first trial across Europe in May 2017, when 600 dyads will be recruited. We hope the platform will constitute a significant step forwards in the European context.

This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 690211.

P14.3. Resource allocation on the boundary of care for people with dementia in Ireland

O’SHEA Eamon, MONAGHAN Christine, KEOGH Fiona

Background: Dementia poses a significant cost burden to health and social care systems. Providing the most cost-effective mix of services is, therefore, becoming a priority for policy-makers in many countries. Evidence suggests that shifting the balance of resource allocation towards more personalised community-based supports can reduce the risk of institutionalisation for some older people on the boundary of care.

Objective: To estimate resource utilization, cost of care and outcomes for people with dementia on the boundary of community and residential care in Ireland, within an innovative, personalised, community-based programme of care for people with dementia - the HSE and Genio Dementia Programme.

Methods: A balance of care approach was used to examine how investment in personalised community care can impact on costs, outcomes and admission to long-stay care facilities for people with dementia. The study examines resource use, costs and outcomes for people with dementia, whose needs can potentially be met in alternative settings, over a three year period. Formal and informal resource use is assessed, as well as housing, personal consumption and residential care costs.

Results: 181 people with dementia on the boundary of care were supported to remain living in the community, receiving a total of 34,635 personalised support hours at a cost of €953,533. The total cost of formal community care was €4,804,563, while the cost of informal care was €8,586,096. In contributing to potentially keeping people living at home for longer, the estimated public expenditure saving associated with the programme was €3,169,561.

Conclusions: Personalised supports are likely to support family carers to continue caring for longer, thus postponing expensive admission to long-stay care facilities. The study has shown that it is possible to increase the availability of personalised supports for people with dementia to augment existing formal care provision and still not exceed residential care costs.

P14.4. How useful are EQ-5D and ZBI in assessing the impact of caring for Alzheimer’s disease patients?

REED Catherine, BARRETT Annabel, LEBREC Jeremie, DODEL Richard, JONES Roy, VELLAS Bruno, WIMO Anders, ARGIMON Josep Maria, BRUNO Giuseppe, HARO Josep Maria

Objective: To describe the relationship between caregiver health-related quality of life (HRQoL), caregiver burden and caregiver time for instrumental activities of daily living (T-IADL) in carers of patients with Alzheimer's disease (AD).

Methods: GERAS is a prospective, non-interventional cohort study in AD patients and caregivers. The Zarit Burden Inventory (ZBI) and the EQ-5D were used to measure burden and HRQoL respectively. Spearman correlations were computed between EQ-5D, ZBI and T-IADL at baseline, 18-months and for change over 18-months. T-IADL and ZBI change scores were summarised by EQ-5D domain change category (better/stable/worse).

Results: 1495 caregivers were available at baseline [67 years (SD 12) and 64% female]. According to baseline patient severity, caregivers’ EQ-5D health state values were 0.86, 0.85 and 0.82 and ZBI total scores were 25, 29 and 34 in mild, moderate and moderately severe/severe AD respectively. T-IADL increased from a mean of 79 hours (SD 89; median 60 hours) at baseline by a mean of 17 hours (SD 105; median 10 hours) over 18-months, and showed a stronger correlation with ZBI than with EQ-5D, although correlations were low for both (e.g. change scores 0.118 ZBI; 0.020 EQ-5D). Worsening within EQ-5D domains (mobility, self-care, usual activities, pain/discomfort and anxiety/depression) was associated with the greatest increase in burden scores, although the majority of caregivers (68-90%) remained stable within each EQ-5D domain. Relative to these stable caregivers, larger increases in T-IADL over 18–months were associated with better ratings in mobility and usual activities but worsening in pain/discomfort. Larger increases in T-IADL were associated with both better and worse ratings in anxiety/depression [23.5 hours better (11%); 12.2 hours stable (68%); 24.8 hours worse (16%)].

Conclusion: EQ-5D health state values had low sensitivity to changes in caregiver time over an 18-month period. ZBI may better reflect the impact of caring for AD patients.

P14.5. Dementia and imagination: valuing the economic benefits of a visual arts intervention

JONES Carys, TUDOR Edwards Rhiannon, WINDLE Gill

Background:There is growing interest in the use of non-pharmacological interventions such as arts programmes for people with dementia and their carers, though these have a mixed evidence base. Evaluative techniques such as Social Return on Investment (SROI) analysis capture the broader economic impact of an intervention and may contribute towards the establishment of an evidence base for the funding of arts programmes. This paper describes the use of SROI analysis in the Dementia and Imagination (D&I) study, a visual arts intervention for people with dementia.

Methods:D&I was delivered in three settings in the UK: the community, care homes and hospital assessment units. Each group consisted of 12 weekly sessions of a visual arts (viewing and making) intervention led by professional artists. The SROI analysis was conducted from a societal perspective. Quantitative and qualitative data were collected at baseline, 3 months and 6 months, and relevant outcomes for the SROI analysis were assigned a monetary value using financial proxies.

Results:Outcomes such as changes in well-being for participants, engagement with art and the community, and changes in staff attitudes towards dementia have been included in the analysis. The final result of the SROI analysis is due in May 2016.

Conclusions:While SROI offers an opportunity to include broader outcomes than the cost-effectiveness analysis approach traditionally used in health economics, the selection of financial proxies for subjective outcomes such as well-being can be controversial and it is good practice to provide transparency in the figures used for an SROI analysis. The SROI analysis of D&I will provide policymakers with an estimate of the social value generated by investing in a visual arts programme for people with dementia. 

P14.6. Impactful and cost-effective post-diagnosis support


Alzheimer’s Society have worked in partnership with other organisations to produce evidence that demonstrates post-diagnosis support that is both effective and value for money.

In partnership with NHS England, Alzheimer’s Society engaged and worked directly with 25 Clinical Commissioning Groups to develop specific plans tailored to levels of local need, to improve diagnosis of dementia and the number of people accessing post diagnosis support.

Increased capacity of the Dementia Adviser service, as well as closer links with primary care, and improved referrals through awareness raising and engaging with local stakeholders, increased the number of people with dementia receiving vital information and support to help them navigate the health and social care system, manage their condition, and to live well.

The demonstrated success of the project led to further funding committed by the CCGs for increasing post-diagnosis support. 

ESRO have carried out extensive qualitative research exploring diagnosis and support systems across the UK, looking at experiences of people with dementia, and at areas in the country exhibiting best practice.

The report highlights key factors of good diagnosis and post-diagnosis support, and identifies practical suggestions that could be implemented at a local level, from ideas that emerge directly from localities studied in the course of the research.

NEF Consulting carried out a social cost-benefit analysis of Alzheimer’s Society’s one-to-one support services for people with dementia, delivered in three locations.

This looked at support based in the community after diagnosis and hospital based support, provided during and after a hospital stay. The services were found to have a significant and positive impact on various aspects of wellbeing and safety for both carers and people with dementia, and to produce cost savings to the state.



Last Updated: Tuesday 10 January 2017


  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche