Sense of Involvement and Support in Persons with Cognitive Decline in Ordinary Dwelling

Authors: Annika Kjallman Alm, Ove Hellzen, Malin Rising-Holmstrom

Abstract:

Worldwide, the number of people who are living with dementia is increasing because of an aging population, which leads to increased financial and social costs, including reduced quality of life for people with dementia and their care partners. Most people who have dementia reside in the community. Aging in place could be described as having the health and social supports and services you need to live safely and independently in your home or your society for as long as you wish and are able. People with dementia are not different than people without dementia where they want to remain at home, if possible, with a sense of familiarity and engagement in typical everyday activities. So how do persons with dementia or cognitive decline see their possibilities to be socially involved and experience support? The aim of this study was to explore persons with cognitive decline's sense of involvement and support living in the ordinary dwelling. The study was approved by the Ethical Review Authority in Sweden prior to the interviews. Interviews were conducted with 20 persons living at home, either alone or in a relationship. The persons had perceived cognitive decline; some were under investigation or already had a diagnose of early dementia. Thematic analysis was used to identify, analyze, and report patterns within the data. Researchers extracted three main themes through participants’ interviews: a) Importance of social involvement with family and friends. b) Hindrances for social involvement. c) Struggling mentally with a new life situation. Results found that going to activity centers, staying involved, and meeting friends and family enhanced the sense of involvement and support. There were also hindrances to a sense of involvement and support as they struggled with the diagnose and the changes in daily life, such as physical problems, mental problems, or economic issues. The mental struggle of accepting the cognitive decline and the changes in daily life it brought was also an issue for some of the participants. A multidimensional support should be provided by the community to enable persons with cognitive decline to stay involved in family and community in the comfort of their own homes.

Keywords: aging in place, cognitive decline, dementia, sense of involvement