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P8. Socio.economic aspects of dementia

Detailed programme, abstracts and poster presentations

P8.1. Delivering fair dementia care of people with advanced dementia

PEARSON James

Alzheimer Scotland, Glasgow, United Kingdom

People with advanced dementia do not have equitable access to free health and nursing care on a par with those who have other progressive and life limiting illnesses in Scotland. Alzheimer Scotland is campaigning to end this injustice.

Alzheimer Scotland established the Fair Dementia Care Commission, a small group of experts led by the former First Minister for Scotland, Sir Henry McLeish, to consider what was needed to end the inequality in access to health and nursing care in advanced dementia and end the unfair and disproportionate financial impacts of social care charges on people with advanced dementia, their carers and families. The Commission sought to:

  • determine how advanced dementia is defined and recognized in practice
  • estimate the size of the population of people living with and dying from advanced dementia in Scotland
  • examine and describe the current charges and cost framework of advanced dementia care
  • make recommendations on what needs to change for Scotland to lead the way in achieving fair dementia care from diagnosis to the end of life.

In January 2019, Alzheimer Scotland published the Commission’s report, ‘Delivering fair dementia care for people with advanced dementia’. The report highlights that the complex needs associated with advanced dementia have not been fully understood or recognised as health or nursing care and therefore free at the point of delivery.

The report also makes recommendations to the Scottish government and other public bodies, including a recommendation that the government accept that people with advanced dementia must have equality of access to free health care on a par with people who are living with other progressive and terminal illnesses.

The report marks the beginning of a campaign to end this glaring inequality. This presentation will set out the key findings of the report and provide an update on the campaign.

P8.2. Are workplaces fit for the dementia care needs of the 21st century?

GERRARD Lizzie, LITTLE Amy

Alzheimer's Society, London, United Kingdom

A 2018 report by Alzheimer’s Disease International and the Karolinska Institutet (‘Global estimates of informal care’), calculated the annual global number of informal care hours provided to people with dementia was 82 billion hours, the equivalent of more than 40 million full-time workers, and women contribute 58 billion (71%) of these hours.

So what happens when a woman needs to work and provide dementia care support? Add a global aging population, and care for other conditions to the equation and we're seeing a huge but unsustainable and unfair reliance on unpaid female carers. Women are often expected to care for young children as well as the older generation (the so-called ‘sandwich generation’), often alongside paid professional work. We cannot get away from the fact that unpaid care supporters are compensating for under-developed and under-resourced social care systems.

What is the impact on these under-supported care partners? And why are governments and corporations so slow to recognise the social, health and economic benefits of supporting those with care responsibilities?

Through breakthroughs in gender equality, women’s participation in the workplace continues to grow, and girls’ participation in education and training opportunities is increasing. Social and cultural family structures are evolving. Yet the financial, social and cultural pressure for families, mostly women, to provide care continues, often forcing women to leave paid employment, reduce hours or take unpaid leave if their employer allows. Can governments keep assuming that there will be sufficient women available, ready and willing to assume unpaid dementia caring responsibilities? And should they be?

This session explores examples of government policies and proactive workplace practices to address inequalities and support those with caring roles. For the sake of women’s economic empowerment, global economies and the right to healthy lives and wellbeing, a new approach is urgently needed.

P8.3. Cost of dementia in Switzerland

ACKERMANN Maya, BEGEY Karine, BECKER Stefanie

Alzheimer Switzerland, Bern, Switzerland

Facts and figures about dementia such as monetary costs of the illness are important tools to raise awareness and achieve societal change. Thus, the goal of this study is to estimate the cost of dementia in Switzerland. Our objective is double-fold: Firstly, we estimate the prevalence-based total annual cost of dementia in Switzerland from a societal perspective and combine top-down as well as bottom-up approaches. Furthermore, we include both direct and indirect costs of dementia. These estimations are based on Swiss national statistics and surveys, international reviews and expert interviews and can be compared to the international literature in this field of research. Second, we estimate the individual costs of a needs-based dementia care depending on different parameters such as severity of the dementia or housing situation. To do so, we create four hypothetical cases of a person in different stages of Alzheimer’s disease (AD). We employ two focus groups with experts and family caregivers that quantify this person’s needs in an ideal care situation. Based on this information, we determine the costs for each case and take account of regional variations. In sum, the present study will show the annual costs of dementia in Switzerland and allow for some crucial conclusions regarding the monetary consequences of a needs-based dementia care.

P8.4. Health-related quality of life in people with pre-dementia or dementia

LANDEIRO Filipa1, MUGHAL Seher1, WALSH Katie1, NYE Elsbeth1, MORTON Jasmine1, WILLIAMS Harriet1, GHINAI Isaac1, CASTRO Yovanna2, LEAL Jose1, ROBERTS Nia1, WACE Helena1, HANDELS Ron3, LECOMTE Pascal4, GUSTAVSON Anders2, RONCANCIO-DIAZ Emilse5, BELGER Mark6, JHUTI Gurleen2, BOUVY Jacoline7, POTASHMAN Michele8, TOCKHORN-HEIDENREICH Antje6, GRAY Alastair1

1University of Oxford, Oxford, United Kingdom, 2F. Hoffmann - La Roche, Basel, Switzerland, 3Maastricht University, Maastricht, Netherlands, 4Novartis Pharma, Basel, Switzerland, 5GE Healthcare, Amersham, United Kingdom, 6Eli Lilly and Company, Windlesham, United Kingdom, 7National Institute for Health and Care Excellence, London, United Kingdom, 8Biogen, Cambridge, United States

Dementia profoundly affects the health-related quality of life (HR-QoL) of the person living with it and their caregivers.

We conducted a systematic literature review and meta-analysis summarising HR-QoL, measured using preference based instruments, of people with dementia or disease stages preceding dementia, to understand how HR-QoL changes across the full disease spectrum.

We searched MEDLINE, Embase, CDSR, CENTRAL, DARE, NHS EED, and PsycINFO for studies published between January 1990 and April 2017, reporting utility estimates for people with adult-onset pre-dementia or dementia. Utilities were extracted by stage of the disease, for both self-rated and proxy-rated measurements.

A meta-analysis was conducted in which utilities obtained from EQ-5D were pooled by disease severity and respondent (self- or proxy-rated) using a fixed effects approach. Of the 61 references identified, 47 (77%) used EQ-5D to measure HR-QoL. Caregiver proxy-rated QoL declined from 0.80 for mild cognitive impairment (MCI) (95% CI: 0.75 to 0.85) to 0.36 for severe dementia (95% CI: 0.18 to 0.53), while self-rated QoL showed little change, at 0.86 for MCI (95% CI: 0.78 to 0.93) and 0.82 for severe dementia (95% CI: 0.64 to 1.00).

As disease progresses, significant discrepancies are found between self- and proxy-ratings. A number of factors may explain this difference including: the validity of self-reported HR-QoL in later stages of the disease, a bias resulting from reduced response rates as the disease progresses, patients being able to adapt to the chronic condition, caregiver’s burden influencing their ratings of the patient’s HR-QoL.

Future studies assessing the sensitivity of EQ-5D in these populations might prove useful as well as studies investigating the impact of caregiver burden on proxy-rated HR-QoL. This work forms part of the real world outcomes across the AD spectrum for better care: Multi-modal data access platform (ROADMAP) project.

P8.5. The preferred place of care for middle-aged and older adults who had acquired dementia

NAKANISHI Miharu1, MIYAMOTO Yuki2, NAKASHIMA Taeko3, SHINDO Yumi4, NISHIDA Atsushi1

1Tokyo Metropolitan Institute of Medical Science, Tokyo, Japan, 2The University of Tokyo, Tokyo, Japan, 3Nihon Fukushi University, Aichi, Japan, 4National Center for Geriatrics and Gerontology, Aichi, Japan

Background: Japan introduced dementia-friendly initiatives into its national policies to help people with dementia remain involved in society as long as possible. Understanding middle-aged and older adults’ preferences for place of care and identifying factors that influence their preferences would help policy decision makers promote dementia friendly initiatives.

Aim: The present study aimed to investigate the care preferences of middle-aged and older adults if they acquired dementia in Japan and the United States.

Methods: We conducted a cross-sectional observational study using an internet-based questionnaire survey of Japanese residents with Japanese ethnicity, Japanese Americans, and non-Asian Americans aged 40-70 years. Overall, 104 Japanese residents, 93 Japanese Americans, and 104 non-Asian Americans completed the survey. Participants were asked to answer the items based on a hypothetical situation in which they had acquired dementia requiring regular care and supervision.

Results:Participants, if they acquired dementia, preferred nursing home care (29.9%), followed by professional home care (19.6%), family home care (17.6%), and hospital care (11.3%). Japanese residents had a significantly lower preference for professional home care than did Japanese or non-Asian Americans (adjusted odds ratio = 0.28, 95% confidence interval = 0.10–0.75). Between-ethnicity difference in care preferences was not observed.

Conclusions: A low preference for professional home care among the middle-aged and older adults may be influenced by country-specific long-term and dementia care systems. Policy decision-makers should develop family-centred support programs to increase the choice and control available for families of people living with dementia.

P8.6. Service priorities for people with dementia in Ireland: A mixed methods study of health care professionals

PIERSE Tom, KEOGH Fiona, O'SHEA Eamon

CESRD, NUI Galway, Galway, Ireland

Background and Aims:Public services for people with dementia living in the community face significant resource constraints. The aims of this study are to identify an optimum mix of services for six dementia case types and to gain a greater understanding of the resource allocation decision making process.

Methods: Irish datasets were used to identify dementia cases types representing 46% of cases in the datasets. Vignettes were prepared for six case types ranging from low to high dependency and needs. Carers, people with dementia and health and social care professionals (HSCPs) took part in mixed methods workshops. Initial findings for the HSCPs are reported here (N=23).  HSCP participants firstly quantitatively identified an optimum care package for a set of six vignettes, then qualitatively discussed the needs and individual case factors that were driving service recommendations. The quantitative exercise was repeated with a budget constraint followed by a qualitative discussion.

Results:When no budget constraint is imposed, participants recommended the use of a wide range of services. Home help, in-home respite and day care services comprised 62% of spending in this scenario. When a budget constraint was imposed, participants focused on essential care and reduced services aimed at prevention, quality of life and carer support. Resources were not redistributed between cases (e.g. from low need to higher need cases) as a similar proportion of the budget was allocated to each of the cases in both scenarios.

Discussion:People with dementia living in the community and their families have a wide range of health and social care needs. Optimum dementia care packages included a wide range of services to meet these needs. However, a budget constraint resulted in a much narrower range of services with consequent implications in terms of unmet need and a reactive rather than preventive approach to care.

 

 
 

Last Updated: Wednesday 19 June 2019

 

 
  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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