Towards personalized dementia care through meaningful activities supported by technology: A multisite qualitative study with care professionals.

BACKGROUND: Person-centred care is widely recognised as important for helping people with dementia maintain a sense of self and purpose in life - especially for those living in care facilities. Despite this, most care practices still adopt a medical approach in which physical needs are prioritized over psychosocial well-being. Addressing the need to find ways of promoting person-centred approaches in care, this study explored care professionals' reflections on a novel, technological intervention (SENSE-GARDEN) that combines multisensory stimuli and digital media to create personalized environments for people with dementia. The aim of this study was to explore the experiences of care professionals who had used SENSE-GARDEN for approximately 1 year. METHODS: Three care homes in Norway, Belgium, and Portugal and 1 hospital in Romania used the SENSE-GARDEN with residents/patients with moderate to severe dementia over the course of 1 year. Qualitative data - including observations and interviews with 2 care professionals - were collected at the beginning of the study period from the Norwegian care home to explore initial impressions of the new SENSE-GARDEN room. At the end of the study period, 8 care professionals across the 4 facilities were interviewed for an in-depth exploration of their experiences. The two sets of data were analysed separately through reflexive thematic analysis. RESULTS: At the beginning of the study period, the staffs' focus was mainly on the novelty of the new SENSE-GARDEN room and how it provided opportunities for meaningful experiences. Post-intervention, the care professionals provided reflective accounts on how care could be delivered in alternative ways to standard practice. The themes generated from the post-intervention interviews were: "shifting focus onto personalized care", "building and fostering relationships", and "continuous discoveries". Through delivering person-centred care, the professionals reported a sense of purpose and achievement in their work. CONCLUSIONS: Professionals from care facilities across 4 different countries highlighted the value of interventions such as SENSE-GARDEN as a way of creating opportunities to better know people with dementia. Thus, they experienced improved relationships and greater job satisfaction. However, delivering person-centred interventions is time-consuming, and future research should evaluate the feasibility of sustaining them on a long-term basis.

Client, caregiver, volunteer, and therapist views on a voluntary supported group exercise programme for older adults with dementia.

BACKGROUND: Existing group exercise programmes, or other services offered to maintain physical activity levels, are typically not developed specifically for older adults with dementia. The aim of this study was to gain knowledge about perceptions of a newly developed volunteer supported group exercise programme for older adults with dementia, and any barriers that may have affected participation and compliance. METHODS: Seven (six face-to-face and one by email) interviews were conducted with (i) older adults and volunteers participating in a pilot 12-week group exercise programme, (ii) caregivers, and (iii) therapists leading the group sessions. Interview transcriptions were systemised by use of NVivo 8 and analysed by use of Systematic Text Condensation method. RESULTS: The theme "building relationships" represents the reason why attending this group was important for the participants. The findings suggest that how we organize exercise groups is important, with some sort of extra support, to ensure that persons will begin and continue to participate in new activities outside their homes. CONCLUSIONS: This study showed that it is possible to involve home-dwelling persons with cognitive decline and dementia in group exercise sessions. The role of building relationships was the major factor for successful participation. Providing support and ensuring motivation for persons attending the group outside their homes was essential, both for them and their caregivers. Service providers should not underestimate the importance of building relationships between persons involved in service offers.

My husband is not ill; he has memory loss - caregivers´ perspectives on health care services for persons with dementia.

BACKGROUND: To explore informal caregivers' perspectives and perceived needs related to health care services/activities for older adults with dementia, in order to understand barriers and facilitators to participation. The study represents a first step, and explores challenges to overcome, in order to design new activities and services adapted to older adults with dementia. METHODS: We used a qualitative approach where eight caregivers of people with a dementia diagnosis were included. We recruited participants from a counselling service centre, for home dwelling people with dementia and their families, in a Norwegian municipality. We transcribed data from two focus group interviews and completed analyses by use of Systematic Text Condensation method. RESULTS: The findings indicate that current health care services for people with dementia do not meet the needs of either the people with dementia or their caregivers. The few activities/services offered are characterised by passivity and lack of individual and personalised care. Existing health care services and new activities should consider each individual's resources, interests, and physical function to ensure that both people with dementia and their caregivers want to accept support. CONCLUSIONS: To develop health care services and activities for people with dementia, participation and involvement from both people with dementia and their caregivers is necessary. People with dementia are more than their diagnosis. Future health care providers have to widen their focus and consider the individual person with dementia.

Long-Term Effects of Individually Tailored Physical Training and Activity on Physical Function, Well-Being and Cognition in Scandinavian Nursing Home Residents: A Randomized Controlled Trial.

BACKGROUND: The preservation of physical functions such as muscle strength, balance and mobility is fundamental to maintaining independence in activities of daily living (ADL). The physical activity level of most nursing home residents is very low, which implies that they are often subject to a decline in health, mobility, autonomy and social contacts and are also at risk of suffering a decline in mental well-being. In a previous study, we demonstrated that transfers, balance and physical activity level improved after 3 months of individually tailored intervention in nursing home residents. OBJECTIVE: To evaluate the long-term effects on ADL, balance function, physical activity level, physical performance, falls-related self-efficacy, well-being and cognitive function 3 months after the completion of our intervention in nursing home residents. METHODS: The study was a multicenter randomized, controlled clinical trial with a parallel-group design. It was conducted in nursing homes in Sweden, Norway and Denmark, with an intervention period lasting 3 months and a follow-up at 6 months. Initially, 322 nursing home residents with a mean age of 85 years were included; 85 from Sweden, 171 from Norway and 66 from Denmark. Of these, 241 [129 intervention group (IG), 112 control group (CG)] were eligible for the 6-month follow-up tests. The level of dependence in ADL, physical activity level, several dimensions of physical function, well-being, falls-related self-efficacy and cognitive function were assessed with reliable and valid instruments at baseline, immediately after 3 months of intervention and 3 months later at the 6-month follow-up. RESULTS: After 3 months of intervention and an additional period of 3 months without intervention, only the following 2 variables demonstrated significant group differences: social and cognitive function, measured by the Functional Independence Measure n-r, where the IG deteriorated while the CG was almost stable. However, regarding transfers, the IG deteriorated significantly less than the CG. CONCLUSION: Without supervised physical exercise that challenged the individuals' capability, gains in ADL function, balance and transfer ability deteriorated during the 3 months following the intervention period. Thus, continuous, individually adjusted and supported physical activity seems crucial for the maintenance of physical functions in these vulnerable elderly persons.

Characteristics of a self-management support programme applicable in primary health care: a qualitative study of users' and health professionals' perceptions.

BACKGROUND: Development of more self-management support programmes in primary health care has been one option used to enhance positive outcomes in chronic disease management. At present, research results provide no consensus on what would be the best way to develop support programmes into new settings. The aim of the present study was therefore to explore users' and health professionals' perceptions of what would be the vital elements in a self - management support programme applicable in primary health care, how to account for them, and why. METHODS: Four qualitative, semi-structured focus group interviews were conducted in Central Norway. The informants possessed experience in development, provision, or participation in a self-management support programme. Data was analysed by the Systematic Text Condensation method. RESULTS: The results showed an overall positive expectation to the potential benefits of development of a self-management support programme in primary health care. Despite somewhat different arguments and perspectives, the users and the health professionals had a joint agreement on core characteristics; a self-management support programme in primary health care should therefore be generic, not disease specific, and delivered in a group- based format. A special focus should be on the everyday- life of the participants. The most challenging aspect was a present lack of competence and experience among health professionals to moderate self-management support programmes. CONCLUSIONS: The development and design of a relevant and applicable self-management support programme in primary health care should balance the interests of the users with the possibilities and constraints within each municipality. It would be vital to benefit from the closeness of the patients' every-day life situations. The user informants' perception of a self-management support programme as a supplement to regular medical treatment represented an expanded understanding of the self-management support concept. An exploring approach should be applied in the development of the health professionals' competence in practice. The effect of a self-management support programme based on the core characteristics found in this study needs to be evaluated.

Effects of individually tailored physical and daily activities in nursing home residents on activities of daily living, physical performance and physical activity level: a randomized controlled trial.

BACKGROUND: Nursing home residents are extremely inactive and deterioration in health and an increasing dependence in activities of daily living (ADL) are common. Physical activity and exercise play a major role in the preservation of physical function and quality of life late in life. However, evidence for the benefit of rehabilitation in nursing home residents is conflicting and inconclusive. OBJECTIVE: To evaluate the effect of an individually tailored intervention program of 3 months, for nursing home residents, on ADL, balance, physical activity level, mobility and muscle strength. METHODS: In this single-blind randomized clinical trial with parallel groups, nursing home residents >64 years of age from three Nordic countries were included. The intervention group (IG) was assigned to individually tailored physical and daily activities, while the control group (CG) received ordinary care. Primary outcomes were ADL and balance, and secondary outcomes physical activity level, mobility and muscle strength. RESULTS: At baseline, 322 nursing home residents were included, of whom 266 were assessed after 3 months of intervention. Following the intervention, a significant difference was found between participants in the IG and CG on measures of balance, physical activity and transfers. The IG significantly improved walking/wheelchair speed and functional leg muscle strength. The CG had significantly deteriorated in ADL, balance and transfers. Persons who had taken part in the intervention for more than 150 min/week significantly improved their balance and physical activity level. Participation in more than 10 weeks of intervention significantly improved physical activity and walking/wheelchair speed, while a deterioration was seen in those who had participated less. CONCLUSION: Individually tailored intervention in nursing home residents focusing on physical and daily activities is effective in improving transfers, balance and physical activity level compared to usual care. The effect of the intervention is dependent on the total activity time.

Impacts of COVID-19 restrictions on level of physical activity and health in home-dwelling older adults in Norway.

BACKGROUND: The spread of the coronavirus in spring 2020 led to a lockdown of physical activity (PA) offers. The aim of this study was to investigate how PA, as well as general and mental health, in community-dwelling older adults were affected by the COVID-19 restrictions in Norway. METHODS: Invitation to participate in the study was sent via Facebook and the Norwegian Pensioners' Association. Inclusion criteria were being ≥ 65 years old and living at home. Participants completed a questionnaire either digitally or on paper in June-August 2020. The questionnaire included questions on PA, general health, and mental health both before (13th of March) and during lockdown. RESULTS: We included 565 participants (mean age 74 ± 5.3 years, 60.4% female); almost 60% had a university degree, 84% reported performing PA more than once per week, and 20% reported a fall in the previous 12 months. The Wilcoxon signed-rank test indicated that the corona lockdown significantly reduced activity level (Z = -4.918, p < 0.001), general health (Z = -6,910, p < 0.001) and mental health (Z = -12.114, p < 0.001). Those who were less active during lockdown had higher odds of experiencing worse health than those who maintained their activity level, odds ratio: 9.36 (95% CI = 4.71-18.58, p < 0.001) for general health and 2.41 (95% CI = 1.52-3.83, p < 0.001) for mental health. Those who attended organized exercise offers before lockdown had higher odds of being less active during lockdown compared to those who did not exercise in an organized setting, odds ratio: 3.21 (95% CI = 2.17-5.76, p < 0.001). CONCLUSIONS: In a relatively highly educated and active group of older participants, COVID-19 restrictions still negatively affected level of activity as well as general and mental health. These short-term decreases in activity level and health suggest that preventive actions and increased focus on measures to support older adults in maintaining an active lifestyle are needed.

Effect of physical training on urinary incontinence: a randomized parallel group trial in nursing homes.

BACKGROUND: Residents in nursing homes (NHs) are often frail older persons who have impaired physical activity. Urinary incontinence (UI) is a common complaint for residents in NHs. Reduced functional ability and residence in NHs are documented to be risk factors for UI. OBJECTIVE: To investigate if an individualized training program designed to improve activity of daily living (ADL) and physical capacity among residents in nursing homes has any impact on UI. MATERIALS AND METHODS: This randomized controlled trial was a substudy of a Nordic multicenter study. Participants had to be >65 years, have stayed in the NH for more than 3 months and in need of assistance in at least one ADL. A total of 98 residents were randomly allocated to either a training group (n = 48) or a control group (n = 50) after baseline registrations. The training program lasted for 3 months and included accommodated physical activity and ADL training. Personal treatment goals were elicited for each subject. The control group received their usual care. The main outcome measure was UI as measured by a 24-hour pad-weighing test. There was no statistically significant difference between the groups on this measure at baseline (P = 0.15). Changes were calculated from baseline to 3 months after the end of the intervention. RESULTS: Altogether, 68 participants were included in the analysis, 35 in the intervention group and 33 in the control group. The average age was 84.3 years. The 3 months' postintervention adjusted mean difference between groups according to amount of leakage was 191 g (P = 0.03). This result was statistically significant after adjusting for baseline level, age, sex, and functional status. The leakage increased in residents not receiving the experimental intervention, while UI in the training group showed improvement. CONCLUSION: The intervention group had significant better results compared with the control group after an individualized training program designed to improve ADL and physical capacity. Further studies are needed to evaluate the effect of a goal-oriented physical training program toward NH residents UI complaints.

Functional level, physical activity and wellbeing in nursing home residents in three Nordic countries.

BACKGROUND AND AIMS: The main aim of this study was to describe physical and cognitive function and wellbeing among nursing home residents in three Nordic countries. A second aim was to compare groups of differing ages, levels of dependency in daily life activities (ADL), degree of fall-related self-efficacy, wellbeing and cognitive function. METHODS: 322 residents from nursing homes in Sweden, Norway and Denmark were included. Physical and cognitive function, level of physical activity and wellbeing were assessed by means of reliable and valid instruments. RESULTS: The mean age of participants was 85 years. Sixty percent could rise from a chair and 64% could walk independently. Men were younger and more physically active than women. Participants with a high level of dependency in ADL had lower physical and cognitive functions, were less physically active, and had lower fall-related self-efficacy than participants less dependent in ADL. Participants with low cognitive function had high fall-related self-efficacy. CONCLUSIONS: These data demonstrate that elderly residents in nursing homes in Sweden, Norway and Denmark are frail but heterogeneous. Significant differences in physical activity, physical function and dependency in ADL were seen in relation to age, fall-related self-efficacy, wellbeing and cognitive function.

A Nordic multi-center study on physical and daily activities for residents in nursing home settings: design of a randomized, controlled trial.

BACKGROUND AND AIMS: Nursing home residents constitute a frail, multi-diseased and heterogeneous group. As physical activity is essential for the preservation of function, personalized training and activities are of great importance. The main objective of this study was to describe the influence of an individually tailored intervention program, in a nursing home setting, on physical capacity, degree of dependence in Activities of Daily Living (ADL), long-term participation in physical and/or daily activities, and self-rated wellbeing. The aim of the present work is to describe the overall design of the study. METHODS: Nursing homes in Sweden, Norway and Denmark were involved, and 322 residents were randomized to either Intervention or Control groups. The intervention lasted for three months and consisted of physical and daily activities, led by physiotherapists and occupational therapists, and was built on their evaluations and on the goals expressed by each resident. Tests of muscle strength, mobility, balance function and confidence, ADL, level of physical activity, wellbeing and cognitive function were performed at baseline, directly after the intervention period and three months later. RESULTS: They will be presented in articles to follow. CONCLUSIONS: Although it is a great challenge to carry out an intervention study directed toward such a frail population, it is of great interest to find out whether individually tailored and enhanced activities can lead to decreased dependence in ADL and increased wellbeing.