'Social Trials' for dementia care

Being diagnosed with dementia makes people question how to find their way through a changing future: relationships with friends and family change and people may increasingly lose trust in their own abilities or lose the connection with their loved ones and their community. In the end, moving to a nursing home appears to be the only option for people with dementia to relieve the strain on their (informal) caregivers. Without guidance, people with dementia and their loved ones increasingly avoid social contacts and stay indoors more often. The Social Approach to Dementia¹ supports people with dementia and their loved ones as well as (informal) caregivers to prepare them for a continuously changing future. The Social Approach to Dementia aims to increase quality of life, reduce pressure on the labour market, prevent social isolation, improve access to the right kind of care and lower healthcare costs. In addition, we aim are looking into ways to realise the organizational and financial embedding of this Social Approach within the current system. This article will outline the urgency of the societal problem in the Netherlands, and to what extent the goals of the Social Approach to Dementia aim to contribute to these societal problems. We will also explain how the PwC global SDOH-framework aided in realising impact by enabling collaboration with municipalities, healthcare providers, healthcare insurers and the Dutch Ministry of Health, Welfare and Sport.

_{¹Ideology of Anne-Mei The, professor by special appointment in Long-term care and the Social Approach to Dementia at the VU Amsterdam and initiator-owner of the Tao of Care}

Background

Dementia is one of the most common causes of disability and mortality among the elderly, affecting more than 10.5 million people in Europe. Over 70% of the people with dementia live in western Europe². At 16.8 individuals per thousand inhabitants, a relatively large share of elderly in the Dutch population will be affected with dementia. It is estimated that by the year 2050, dementia prevalence in the Netherlands has doubled. In addition, costs for people with dementia in the Netherlands in 2015 amounted to €6.6 billion. By 2040, this number is estimated to rise to €15.6 billion, doubling more than twice to 1.31% of the GDP of the Netherlands^3/4. Hereby causing a massive burden on the labour market⁵. The severity of the issue raises questions on both the individual and societal aspect of healthcare for people with dementia: In what way can they continue their daily life? How do they and their loved ones cope with the constantly changing possibilities and limitations? How will we defray healthcare for people with dementia in the future?

Traditionally, dementia related issues were mainly addressed from a medical perspective, whilst the equally important social and psychological components of dementia were mostly ignored. As a result, support for people with dementia is fragmented and only focused on medical needs. However, most of the problems people with dementia encounter are social and psychological. The Social Approach to Dementia shifts the focus from the medical perspective towards a combination of medical, social and psychological perspectives. By doing so, the Social Approach to Dementia connects the challenges of dementia with everyday life.

_{²Alzheimer’s Disease International, World Alzheimer Report 2015

³Government of the Netherlands; Approach Dementia

⁴Verdiepingen/Zorguitgaven

⁵OECD, Health at a Glance 2019}

Initiative ‘Social Trials’

In close cooperation with the Tao of Care – the organisation behind the ideology of the Social Approach to Dementia – PwC helps solving the individual and societal challenges related to dementia by experimenting with the Social Approach to Dementia. PwC is within this initiative responsible for project, program and stakeholder management as well as helping to deliver the strategy for creating new, dynamic standards for dementia care. Extensive business cases and continuous monitoring on the effects from the Social Approach on people with dementia and their loved ones, provide insights on the positive effects of the Social Approach of Dementia. The positive effects consist of three elements: First, we aim to improve quality of life of people with dementia and their loved ones, that often provide informal care, by developing and experimenting with new ways of supporting people through a Social Approach. When doing so, people with dementia and their loved ones can happily live at home for a longer period. Secondly, we aim to relieve the pressure on the Dutch labour market in the healthcare sector. When implementing the Social Approach as a standard for dementia care throughout the Netherlands, the amount of healthcare professionals needed can be reduced by roughly 18% as a consequence of amongst others the need for medical care and by adding different types of professionals without a medical background⁶. Lastly, the Social Approach has the potential to reduce total healthcare costs for people with dementia by roughly €590 million a year by 2022 in the Netherlands by postponing admittance to nursing homes, reducing the number of professionals involved and replacing the need for medical care to social and psychological support⁷.

_{⁶Based on nationwide rollout of Social Trials in 2022. Sources: Facts and figures Alzheimer Nederland, 2018: CPB Employement market agenda for elderly care 2030, percentage dementia; Actiz infographic labor market for elderly care 2018.

⁷Based on the national 2018 business case by PwC and impact of cooperation with the current healthcare system. Impact has to be validated with stakeholders.}

Up til now, the Social Approach to Dementia has been implemented in four regions in the Netherlands, namely: Amsterdam, ‘s-Hertogenbosch, Amstelveen and Rotterdam. These regions are called the Social Trial regions. Anno 2021 more regions are likely to be added to experiment with the Social Approach to Dementia. In these regions we work with multidisciplinary teams with different backgrounds in healthcare, wellbeing or a non-healthcare background, support the people with dementia. The team members act as guides to the people with dementia. Together they create new meaning to life by restoring roles in personal and public spheres. The team has several unique ways of working that sets them apart from traditional healthcare professionals: They regard the person with dementia as a person instead of a patient, they look at what the person needs in terms of support, instead of providing standard solutions and help cope with a life that changes daily. Next to this the team focuses on providing support to the informal care providers involved and includes the less visible network of a person with dementia, i.e. by addressing informal channels such as grocers or hairdressers.

Halfway through the project the first results have shown the significant impact of the Social Approach to Dementia: In line with the hypothesis the Social Approach realised a positive impact on the quality of life by reducing for example isolation⁸ on the one hand, and on the other hand reduced healthcare cost with circa €560,000⁹. These positive results help to generate evidence to further develop the Social Approach as the new (inter)national standard for people with dementia and guarantee improved quality of life at lower healthcare costs for all.

_{⁸Based on 446 measurements with 87 people with dementia and their informal caregivers. Results show improvements on all domains: meaning, confidence in your own capabilities, adapting to change, informal caregivers, physical health, inclusiveness in private sphere and inclusiveness in public sphere

⁹Based on 38 cases from the regions Amsterdam, ‘s-Hertogenbosch and Amstelveen up until September 2020. Calculated by subtracting healthcare costs per domain with and without support according to the Social Approach to Dementia.}

The positive effects of the Social Approach to Dementia are monitored through case studies

During the four-year Social Trials, the effects of the Social Approach to Dementia are monitored by conducting, analysing and reflecting on individual case studies. By means of interviews and questionnaires narratives are acquired, that are analysed and converted into quantitative data. This approach is monitored by an independent supervisory committee to ensure the quality and validity of the results. Below a summarised example of such a case study can be found.

A summarized, fictional case:
When the Social Approach team met the person with dementia, they met a socially isolated man with a progressed form of dementia, that sat around the house all day. His wife, also his informal caregiver, was overly burdened with the care for her beloved husband, which made her feel uncomfortable leaving the house. Their general practitioner and the case manager involved both aimed at admission to a nursing home because the situation had become untenable recently. Fortunately, the team was able to get the man with dementia out of the house again to visit the local elderly centre by creating a basis of trust with both the man and his wife. As a result, the man with dementia regained contact with his neighbours and friends and was able to be part of the local community again. Moreover, his wife had more time to herself, relieving some of her burden. In addition, the team arranged that a local asylum seeker walked with the man with dementia once a week. Simultaneously, the person with dementia helped the asylum seeker in mastering the Dutch language. As a result, the person with dementia regained purpose in life which led to an increase in the quality of life of both the man with dementia and his loved one. Through the involvement of an asylum seeker instead of professional healthcare practitioners, substitution could take place which led to less involvement of formal healthcare practitioners, in turn decreasing pressure on the professional labour market. Finally, admittance into a nursing home was postponed, which prevented high healthcare costs.

The SDOH-framework aided in creating impact through unique collaboration with different players in the health ecosystem

In order to ensure sustainable, long-term, financial embedding of the Social Approach to Dementia in the current healthcare system, the first step is to build the collective will with all stakeholders involved in the financing and provision of both social and medical (elderly) care (step 1 of the SDOH-framework - Build collective will).

The foremost important stakeholder in this field is the Dutch Ministry of Health, Welfare and Sports. In addition, the local municipality, healthcare provider, healthcare insurer and care office joined the Social Trial experiment in each region. By explaining the complexity of the situation and urge for change, namely the increasing population with dementia causing rising pressure on healthcare system, the labour market and healthcare costs, and by explaining the predicted impact of the Social Trials, all stakeholders agreed upon the importance of the Social Approach to Dementia care. Moreover, they decided to work together, fund the Social Trials collectively and pledged to work together on a solution to embed the Social Approach to Dementia in the healthcare system (step 2 of the SDOH-framework - Develop standard but adaptable frameworks). Together, they formed a coalition of partners willing to stretch their roles and responsibilities.

Building the collective will - a coalition of stakeholders closely working together and willing to stretch their roles - is critical to implement the Social Approach to Dementia and develop new, dynamic standards for dementia care – step 1 & 2

To demonstrate the success of the Social Approach to Dementia, specific initiatives (that asked for adjustment of internal management and close collaboration between stakeholders) were developed and implemented, after which the entire process needed to be monitored and evaluated in order to pinpoint learning effects. These outcomes form the basis for sustainably creating a new standard of dementia care after the trial period (step 3 of the SDOH-framework - Generate data insights to inform decision making).

The multiplicity of stakeholders makes this complicated. Even more so, because the parties involved are highly partitioned. The municipality, the insurer and the healthcare agency all have their own interests. The Social Approach envisaged that savings were going to be distributed equally. What continues to make things difficult is that the costs precede the benefits. To ensure the desired win-win situation of improved quality of life at lower healthcare cost, it is necessary to ensure innovation and shift healthcare budgets so that return on investment is guaranteed for all stakeholders involved (step 4 of the SDOH-framework - Engage and reflect the community).

Next to improving quality of life, reducing the pressure on the labour market and lowering healthcare costs for people with Dementia, we aim to develop a viable basis for nationwide implementation of the Social Approach to Dementia (step 5 of the SDOH-framework - Measure and redeploy). At the end of the Social Trial period of four years in 2022, the aim is to have created new healthcare standards for people with dementia. As a first step in this process, the Social Approach to Dementia became a part of the national Dutch strategy for dementia care, which is a strategic program from the Dutch Ministry of Health, Welfare and Sports to intensify and streamline efforts in this domain in 2021-2030¹⁰. These standards describe the support for people with dementia according to the Social Approach to Dementia as well as the organizational and financial embedding of the teams. This includes regional contexts, terms and conditions.

_{¹⁰Government of the Netherlands; National Dementia Strategy}