Abstract
Introduction: Dementia is the most expensive category of diseases. For the Netherlands, more than 10% of all health care expenses are related to care for people with dementia. As their number is to double the next thirty years, it will be a huge challenge to deal with as a society.
It requires an integrated response of acute, long-term, and social care, the public sector, such as housing, safety (policy), education, and commercial sectors. Furthermore, it will affect our values and views on what is meaningful to people. To address this challenge, the so called Dementia Care Standard (DCS) was developed.
Aims, Objectives, Methods: The DCS is technically a healthcare quality instrument that describes what is considered as good care and support. It covers all above domains from early onset until the end of life. It depicts what needs to be done, not who needs to do this. The latter should be elaborated in regional programs.
We were commissioned by the national stakeholders to draft a four years’ nation-wide implementation-plan for the DCS. We interviewed forty national stakeholders and representatives of twelve regions. Based on these inputs we outlined an underlying vision. We also depicted how the implementation at local/regional/national level should be organised.
Key Findings: The DCS conceptually follows the ‘typical’ client-journey of people with dementia (seven years on average) from early recognition. It is then followed by appropriate (needs)-assessment, case-management, advance care planning, an integrated care-/life-plan, co-ordinated person-centred generic and specialised support (domestic, personal, activities, safety measures, treatment, crisis- and respite-services, carers support), polyclinical interventions, residential care, palliative care and aftercare. Most of this can be organised within the current, though siloed, system.
What needs to be strengthened and established within the system and between systems are: co-ordination mechanisms at personal level (case management, advance case planning), local level (multi-disciplinary consultation), regional level (collaborative structures, joint vision) and national level (a generic digital filing environment, a register with performance and improvement information, a nation-wide support structure, collaboration of stakeholders to remove system-deficits).
Ownership in decision-making is crucial, including escalation principles, in case collaborative structures don’t work properly. The (within nation) subsidiarity principle is key.
Conclusions: The proof of the pudding is in the eating. There are risks of administrative burdens, tokenistic involvement and rigid adherence to rules if the DCS is not implemented in line with its intentions, views and values. The implementation-plan strongly advocates the ‘comply or explain’-principle, clear ownership and tailoring collaborative responsibilities.
Implications: The DCS-model can be applied to other target groups with long-standing multiple, complex needs e.g. people with psychiatric issues, mental impairments, homeless people, where governance of cross-sector care and support lies with everyone and thereby with no one. It also requires shared values on tailoring individual and societal priorities.