Day care matters

“People don’t realise how essential this service is until it’s not there”: The benefits and challenges of day care provision in Scotland, insights from the Dementia Day Care Matters study.

In this blog, Dr Michael Smith, Policy and Research Officer with Alzheimer Scotland, shares an overview of the Dementia Day Care Matters report. This research was funded by Alzheimer Scotland and developed in co-production with the dementia community, including members of the Scottish Dementia Working Group and the National Dementia Carers Action Network. Ethical approval was granted by the University of the West of Scotland.

Introduction

Early conversations with the Scottish Dementia Working Group and National Dementia Carers Action Network (collectively known as Active Voice) highlighted the importance of day care for people with dementia, their families and carers.

However, discussions were enveloped by trepidation. Local services were closing as costs and charges grew. Day care had become a crisis intervention service, with less focus on prevention, socialisation and therapeutic activity. There was a worry that this vital service would soon become extinct, so Active Voice asked Alzheimer Scotland to act.

Resultantly, the co-produced Dementia Day Care Matters study was conceptualised, which aimed to understand how registered day care services in Scotland meet the advancing needs of people with dementia and to identify areas for service improvement.

The research used a combination of methods, including speaking with over 100 day care interest holders, analysing and comparing post diagnostic support and service provision data, scrutinising care inspection reports and reviewing the research literature.

The findings show that day care should be seen as the heart of community-based dementia care.

Findings

A literature review was conducted to inform the early development of the study and to understand what is already known. Unequivocal evidence from international research showed that day care has significant benefits for people with dementia and their family carers, supporting people to remain living at home and avoid unnecessary hospital or care home admissions. Day care is firmly embedded as a core dementia care service in many countries, and its benefits were affirmed by the people with dementia, family carers and day care professionals that we interviewed across six day care services:

“What took me aback is how kind they are to you. I don’t like getting treated as if there’s something different about me. I mean, I’m a human being. I’m on this planet. I do exist.” – Person with dementia.

However, in Scotland, day care is not a statutory service, meaning there is no legal requirement to provide a day care place to everyone who might benefit. As such, it is vulnerable to funding cuts, local decision-making regarding provision and inequalities like access and charges.

Surprisingly, Scotland only provides up to 3,312 registered day care places per day, compared with an estimated 90,000 people living with dementia. Provision reflects a fraction (~4%) of potential demand, leaving many without access to support. Locally determined costs and charges lead to inconsistencies, meaning that people with similar needs face different costs depending on where they live, ranging from £0 to £132 per day.

“They introduced a £30 charge, then put it up to £62. But it wasn’t just £62, if you needed transport, it was another £40… £102 for five hours care… You were charged whether you were there or not.” – Family carer.

For professionals, funding is a major challenge to the provision of safe, high quality dementia day care and diminishes the opportunity for appropriate staffing levels. Commissioners said that day care is the cornerstone of dementia care services, but it is undervalued. Its non-statutory status, unexplained low uptake of some services, lack of attention to outcome data and unreliable dementia data frustrates planning and makes service closure decisions inevitable.

“Sometimes it feels like we’re invisible; people don’t realise how essential this service is until it’s not there.” – Day care manager.

However, there are opportunities to enhance the quality of day care. We reviewed service specifications and care inspection reports and found that excellence in day care is defined by personalisation, empowerment, proactivity and partnership or co-development with individuals and families. Furthermore, discussions with inclusive expert advisory panels suggested that implementation of Scotland’s latest clinical and care guidance for dementia, SIGN168, could serve as an improvement compass for dementia day care.

Day Care at the Heart of Community-Based Care

The culmination of these key findings led to the development of the figure, below. The figure sets forth a vision of what day care can be when developed collaboratively: The heart of community-based care. It draws on elements of Alzheimer Scotland’s 8 Pillars and Advanced Dementia Practice Models, contending that integrated day care is central to supporting people with dementia post diagnosis.

Our findings show that day care is placed to provide community-based therapeutic interventions, support for carers, personalised support and to facilitate community connections. It can also help people with dementia as their needs increase and support transitions to and beyond advanced dementia care. This vision is supported by evidence outlined in the Dementia Day Care Matters report, which lays foundations for the development of day care that is integrated, accessible, high quality and evidence based.

We are currently engaging with key interest holders and providers of day care across Scotland. If you would like to engage in further discussion of the findings, feel free to email me, Dr Michael Smith: michaelsmith@alzscot.org

The full report is available here: https://www.alzscot.org/about-us/reports