Background: Rehabilitation is recommended for adults living with dementia. Multidimensional interdisciplinary rehabilitation has the potential to increase the opportunity for older adults with dementia and their caregivers to continue to live an active and social life with participation in society contributing to their health and well-being. However, scientific knowledge and clinical experiences are limited in respect to feasibility of rehabilitation programs which include education and support for informal caregivers.
In very old adults, where dementia is common, a limited numbers of studies have focused on factors associated with loneliness. Due to the risk of the severe health consequences associated with loneliness, there is a need to increase knowledge about the prevalence and factors associated with loneliness among very old adults, especially among those with dementia.
Aim: To evaluate the feasibility of a person-centered multidimensional, interdisciplinary rehabilitation program among community-dwelling adults with dementia and their informal caregivers, and to explore loneliness in adults with dementia.
Methods: From the population-based study, the Umeå 85+/Gerontological Regional Database (GERDA) study, the prevalence of loneliness was assessed in a representative sample of very old adults, aged 85, 90, and 95 years and over, with and without dementia (n =1176). Loneliness was assessed by the question “Do you ever feel lonely?” Data on socio-demographic factors, aspects of social participation, diagnose, medical conditions, routine prescription medications, and assessments were also collected through structured interviews (Paper I).
In the randomized controlled pilot study, the Multidimensional Interdisciplinary Rehabilitation in Dementia (MIDRED) study, a person-centered rehabilitation program for community-dwelling older adults with dementia including education and support for informal primary caregivers, was evaluated. Sixty-one participants with dementia and 67 informal caregivers were randomized to either a control group (usual care) or to the rehabilitation program. The program consisted of assessments and interventions provided by a multiprofessional team over a 20-week rehabilitation period, followed by 2 follow-up periods of 4 weeks each, after 5 and 14 months. In Paper II, the rehabilitation program in the MIDRED study was evaluated in terms of follow-up and response rates, and potential short- and long-term effects in adults with dementia on social participation, loneliness, and mental health. At baseline, and at 5, 12, 24, and 36 months, participation in the society, loneliness, depressive symptoms and psychological well-being were evaluated. The experiences of participating in the rehabilitation program in the MIDRED study were explored in Paper III from the perspectives of participants with dementia (n=16), and in Paper IV from the perspectives of their informal caregivers (n=14). The participants with dementia and their informal caregivers were interviewed separately at the end of the 20-week rehabilitation period, and data were analyzed using qualitative content analysis.
Results: In Paper I the prevalence of loneliness (often/sometimes) did not differ significantly between adults with (50.9%) and without (46.0%) dementia. In multivariable regression models, two variables were significantly associated with loneliness in both study groups (participants with and without dementia); living alone and depressive symptoms. In adults without dementia, living in nursing homes was associated with less loneliness. The preliminary result from Paper II showed that the response rate was high for all assessments in the areas of mental health, loneliness, and social participation until the 12-month follow-up, including questions with multiple-choice options. The response rate after 12 months decreased, particularly for cognitively demanding questions with multiple-choice options in the area of social participation. Overall, there were few statistically significant differences between the groups, but some of the findings seem potentially clinically meaningful. Favoring the intervention group, there were clinically meaningful differences in depressive symptoms (short-term), active recreation, organized social activities, and visiting family and friends (short-term). Furthermore, there were no indications that the rehabilitation program had any clinically meaningful effects on loneliness in the intervention group. The control group seemed more satisfied with their frequency of keeping in touch with others. Paper III identified one central theme: empowered through participation and togetherness – reflecting the perspectives of adults with dementia participating in the rehabilitation program. This theme incorporated four sub-themes: Being strengthened through challenges; gaining insights, motives, and raising concerns about the future; being seen makes participation worthwhile; and feelings of togetherness in prosperity and adversity. The analysis of experiences of informal caregivers’ participation in the program, as described in Paper IV, generated a total of seven categories, encapsulated in three themes: feeling challenged and boosted to face an uncertain future; perceiving supportive activities as sources of both joy and frustration in everyday life; and finding relief in recognizing the relative’s former self.
Conclusion: In very old adults, loneliness seems equally prevalent among those with and without dementia, although well-known risk factors for loneliness, such as depression and living alone, were more common among adults with dementia. The two groups shared two of the three factors associated independently with loneliness (living alone and having depressive symptoms). Living in a nursing home was associated with the experience of less loneliness in those without dementia. These findings contribute to important knowledge when developing strategies to reduce loneliness in this growing age group characterized by high risks of loneliness and dementia.
Overall, a person-centered multidimensional interdisciplinary rehabilitation program for community-dwelling adults with dementia, combined with education and support aimed at their informal caregivers, seems feasible. From the perspective of community-dwelling older adults with dementia and informal caregivers, the rehabilitation program was viable and valuable. The adults with dementia described increased self-esteem by daring and coping in the rehabilitation program. The insights they gained about themselves, and their condition motivated them to continue with their prioritized activities, but also raised concerns about how the future would play out. Collaboration in the group and being seen and acknowledged by staff strengthened their own motivation and self-efficacy among the participants with dementia. Furthermore, the informal caregivers felt empowered by the rehabilitation and more equipped to handle their uncertain future. While participating in the program proved challenging to everyday routines, the benefits appeared to outweigh the strain. The assessments used in this study over three years, in the areas of social participation, loneliness, and mental health seems feasible. It seemed cognitively demanding for participants with dementia to answer questions regarding social participation after 12 months. Therefore, the strategy of also asking informal caregivers/staff was valuable in avoiding data loss. The current pilot study indicates potentially clinically meaningful findings on social participation and mental health (short-term) of the rehabilitation program. The findings in this thesis indicate that it is relevant to proceed to an adequately powered RCT. To alleviate loneliness, one could consider additional development of the intervention.