Electronic assessment forms and care plans used for planning dementia care in nursing homes should prompt staff to consider the following needs of residents: activities, maintaining previous roles, reminiscence, freedom and choice, appropriate environment, meaningful relationships, support with grief and loss, and end-of-life care.
Explanation and Examples
The themes above have been described by people with dementia in various studies exploring their self-reported needs and experiences in nursing homes. Developers should therefore consider including these themes into electronic assessment and care plan templates as prompts for nursing home staff to explore with residents.
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Researchers interested in Social health in dementia need to develop instruments to measure the self-management aspect of Social health. Self-management is clearly defined as one of the three domains of Social health besides the capacity to fulfil one’s potential and social participation. Whilst several instruments have been proposed for the measurement of self-management, all have limitations e.g. not measuring the construct as understood in the context of Social health (managing one’s own life), being too burdensome for participants, or ceiling effects on scale of total scores. Instruments which measure the construct of self-management, as understood in this context, without burdening participants and with sufficient discriminatory power for use in intervention studies are needed in order to effectively evaluate interventions aiming to improve Social health in dementia.
Explanation and Examples:
A review of existing instruments which may be used to measure self-management found no options specifically designed to measure the construct as understood in the context of Social health in dementia (to manage one’s own life). In the FindMyApps pilot study, the Self-Management Activities Scale (SMAS) was used, but proved too burdensome to administer. In the FindMyApps definitive randomized controlled trial, another option was used to measure self-management, the Adult Social Care Outcomes Toolkit (ASCOT), which was less burdensome but also less well-aligned to the construct. The usefulness of the ASCOT proved to be further limited by ceiling effects when used in the population participating in this intervention study (people with MCI or mild dementia). Research should be undertaken to confirm consensus amongst people with dementia, their caregivers and researchers in the field on the operational definition of self-management within the context of Social health; to compose statements and scales which investigate the components of the operational definition; and to test the psychometric properties (reliability, validity, responsiveness), feasibility and discriminatory power (precision with which between- and within-subjects variation can be detected) of the resulting instrument in a population of people with MCI/mild dementia, in both an observational and interventional study setting.
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