DEVELOPING THE LONG-TERM CARE EMPOWERMENT MODEL
21st century long-term care is a human right and refers to support that is needed by persons with limited ability to care for themselves due to disability, physical or mental, associated with frailty or multi-morbidity. The needed support can be provided at home, in the community or in residential care facilities and includes for example assistance with daily living activities such as dressing, preparing meals, medication management but also basic healthcare services. Such services are usually provided by formal or informal caregivers, paid or unpaid. Formal care workers might be skilled health or social care workers that are employed, for example by home care providers or in residential care facilities. Informal care workers include unpaid family, friends or community members and paid caregivers who often work outside formal employment regulations or on the basis of unregulated agreements with families.
The World Health Organisation (WHO) defines this as a means to ensure that older adults with a significant loss of capacity can still experience healthy ageing1. In particular, they argue that it is essential to realign health systems to the needs of older adults, requiring a shift from systems designed around curing acute disease, to systems that can provide ongoing care for the chronic conditions that are more prevalent in older age. Governments, it argues, also need to develop long-term care systems to ensure people live their last years with good quality of life and dignity. Other framings call for person-centred orientation, rights-based approaches, and most recently empowerment of through long-term care. We also note that the question of appropriate long-term care for ageing populations has become more pressing in the light of the overwhelming morbidity and mortality rates among older adults caused by the SARS-CoV-2 virus. The deaths in 2020 in residentiallong-term care settings was particularly devastating. The WHO estimates that around half of all European COVID-19 deaths by mid-2020 occurred among care home residents, hundreds of care workers died and tens of thousands of older adults and their carers were affected by coronavirus and by related restrictions. A review of care home mortality in 20 countries reported that while the average share of the population in care homes is 0.73%, the average share of all COVID-19 related deaths that were care home residents was 46%. In addition, disruptions of primary health care and community-based care services have disproportionately affected older adults and other vulnerable groups, limiting access to essential care services and significantly increasing the pressure on informal caregivers. At the same time, the pandemic and subsequent containment measures brought into sharper focus persistent gaps and the vulnerabilities embedded in long-term care systems. There is now widespread public and political interest across Europe to reshape and reform long-term care systems with a view to promoting sustainability, resilience and equity.