Living at home with dementia beyond care; a perspective on the day and night situation

Abstract

Participants: A.A.G. Sponselee (the Netherlands), C.A.M. Huisman (the Netherlands), T.M. Raymundo (Brazil), L.D. Bernardo (Brazil), M.A. van Tilborg (the Netherlands). ISSUE Worldwide around 55 million people live with dementia and this number will increase to 139 million people in 2050 (WHO, 2021). People with a disability or older age depend on support of an informal caregiver. Informal caregivers can experience a higher level of depression and stress and the risk of developing physical health problems are greater compared to non-caregivers. When caring for someone with dementia, the care can be even more demanding because of behavioral and psychological symptoms of dementia (BPSD). Research shows that informal caregivers perceive their situation as permanent and they experience a sense of being tied-in, the feeling to be always alert, unappreciated, feeling trapped, pulled in all directions, and sometimes being in an unreal situation. The care burden may result in a decrease in quality of life of the informal caregiver. CONTENT Our symposium is designed to bring together speakers from the Netherlands and Brazil on the theme living with dementia at home. The speakers will highlight: 1) a project conducted in the Netherlands with method and results 2) visual functioning at home 3) living with dementia at home in Brazil. STRUCTURE Huisman will introduce the project ‘a good night for a better day’. A project performed in the Netherlands, the central issue is how can technology support a better sleep for people with dementia and their informal caregiver living at home. In the project we assume existing technology and examine what is needed to match these technologies to the context. Sponselee will talk about the perspectives of different stakeholders in the Netherlands on challenges during the night for people with dementia and their informal caregivers living at home. Van Tilborg will talk about visual functioning of people with dementia in and around home, possible solutions will be discussed. Raymundo and Bernardo (duo presentation) will present the Brazilian scenario and the initiatives aimed at the prevention of dementia, especially those linked to the training of community health agents (which are part of the Brazilian Unified Health System) for the early recognition of signs and symptoms of illness, and those related to the support of family caregivers in the management of behavioral and psychological changes resulting from the disease. In a complementary way, the symposium will present actions aimed at the elderly with a focus on technologies that can be used for cognitive training and cognitive stimulation. CONCLUSION The use of the technology and home modifications can support people with dementia and their caregiver to live at home as long as possible. The implementation is a challenge. This symposium will inspire people to think how we can realize ageing in place with dementia.

Keywords: dementia, sleep, technology, age in place, eye care

Address: Heidelberglaan 7, 3584CS Utrecht, The Netherlands

Email: chantal.huisman@hu.nl

References

World Health Organization. (2021) Dementia. Retrieved from: https://www.who.int/news-room/fact-sheets/detail/dementia.

Acknowledgement: the project “Goede nacht, betere dag” (A good night for a better day) is co-funded by Regieorgaan SIA, part of the Netherlands Organisation for Scientific Research (NWO) and with PPP funding made available by Health~Holland, Top Sector Life Sciences & Health, to stimulate public-private partnerships (EXZ.EXZ.01.005).