Socialisation, ICT-supported community living, and effective dementia care services – Another MDA project has passed the AAL evaluation thresholds
The overall concept for SOCIALAGING is to provide efficient dementia care for people still living in the community through the support for their caregivers. A common scenario is a person with cognitive impairment assisted by an informal carer (e.g. family member, migrant worker, volunteer) and by a professional carer (e.g. social worker involved by the municipality or by regional/national social services). SOCIALAGING explores the links between socialisation, ICT-supported community living, and effective dementia care services. The growing popularity of online social networking has raised the question of how social connectedness can impact a person’s health and whether it plays any role in improving medication adherence, said N.K. Choudhry MD, PhD . The platform offers support services for standalone/independent people as well as for the care team. SOCIALAGING will provide services to properly assess the dementia patient–caregiver dyad related to Caregiver Burden that are critical in decreasing its negative physical and psychological health outcomes. Appropriately tailored interventions can improve the health and well-being of both caregiver and patient.
Informal Caregivers as the Main Source of Care
In most countries, family carers and friends supply the bulk of caring, and the estimated economic value far exceed expenditures on formal care. A continuation of caring roles will be essential, given the demographic and financing pressures facing long-term care systems across the OECD. Continuing to seek ways to support and maintain the supply of family care, therefore, appears a potentially win-win-win approach for the care recipient, the carers, and for public systems . However, there is an implicit cost to the carers themselves. Carers are sometimes called the hidden patients, because they experience high levels of negative effects on psychological and physical health, and carers who suffer ill health are more likely to place their loved one in a nursing home and become ill themselves. Caregivers’ vulnerability to adverse effects can be identified, as can factors, which ameliorate or exacerbate burden and strain . Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission . There have been two decades of exceptional research into carers and we can now identify with a fair degree of accuracy which carers are vulnerable to burnout or health problems. Caregivers who lack education and training on dementia symptoms and care find it difficult to manage all the care activities, and those who have simultaneous obligations in other areas of their lives are particularly susceptible to the negative effects of caregiving. The SOCIALAGING service can identify caregivers at risk and provide personalised solutions.
According to the World Health Organisation (WHO, ADI), 44 million people around the world have some form of dementia, for which there is no effective intervention, to halt or reverse the progressive cognitive impairment. Aside from the economic costs of dementia care, providing informal care to a loved one with dementia creates a great toll on caregivers. Caregiving burden grows with the worsening of cognitive impairment of the patient and is one of the factors influencing institutionalization. As the patient’s condition worsens, it increases the burden on the caregivers, due to the physical, psychological, and emotional stresses that result from caring for the patient. Caregiver burden is influenced by patient behavioral and cognitive status, hours involved in care, stress, social isolation, gender, relationship to the patient, availability of support resources, and caregiver characteristics.
Literature suggests providing information for health care providers to reduce burden and support caregiver health and well-being. Assessment tools available to assess and recognize risk factors and burden in caregivers should be used more often to contribute to reducing caregiver stress and the impact of institutionalization. Using ICT solutions to coordinate clinical activities is not a new concept; however, using ICT services to bridge public and private sectors in order to assess clinical indicators in dementia care at the point of care is relatively underrepresented in research , . Furthermore, using point of care clinical indicators to personalise care services for the person with dementia as well as assess caregiver’s health outcomes provides a low cost service to address the global burden of dementia and can spur further innovation to manage other chronic or non-communicable conditions. The steep increase in the demand for dementia diagnosis and care makes this a timely project with global implications. A version of the SOCIALAGING platform (named cuidadorespro – www.cuidadores.pro) has already been developed and tested, and the added contribution of AAL consortium partners, of international repute, will ensure that the development, analysis and pilot testing of the system contributes to market readiness.
Carer interventions have been proven to keep people at home for an extra year, are cost effective, and reduce the chance of institutional placement fivefold. SOCIALAGING has strong potential to decrease caregiver stress and burden and keep people with dementia at home for longer, thereby improving the quality of life of both the carers and individuals with dementia or cognitive impairment. SOCIALAGING concentrates specifically on caregivers and patients with cognitive impairment, supporting and maintaining the supply of care is a win-win-win approach for the care recipient, for the caregivers, and for public systems. SOCIALAGING will create and deploy an innovative Information and Communication Technology (ICT) platform that provides value-added services for dementia stakeholders, carers, both formal and informal and people living with cognitive impairment and dementia symptoms in order to slow expected deterioration, improve quality of life, improve health, and increase the autonomy of both caregivers and patients. The main objective is to deliver health and social
The cognitive stimulation of patients, and the evaluation-oriented content for caregivers, will provide a tailored intervention at the point of care as part of the value-added services. The SOCIALAGING tailored intervention assesses the caregivers’ knowledge, attitudes, and care practices, and delivers education about interventions in real-time. The value-added services also deliver tacit information to address the educational needs identified during the assessment, including appropriate cognitive stimulation activities, practices to manage symptoms of dementia, and methods to prevent or alleviate caregiver burnout. To improve the identification and treatment of cognitive impairment, dementia, and burnout symptoms, SOCIALAGING will create a clinical evaluation for both the caregiver and patient living in the community, at the point of care. The project will evaluate the clinical impact, the global cost, and the health and quality of life of patients and caregivers in order to assess the service’s effectiveness.
The target groups of the proposal are formal or informal caregivers and persons with cognitive impairment that will use the platform services and will obtain direct and indirect benefits of the use, depending mainly on the degree of dependency of the patient. SOCIALAGING users are members of a community to coordinate and manage care: it includes patients with cognitive impairment, medical staff, family members, and also friends, volunteers, other caregivers, or caregivers employed by the family (including migrant workers).