Trends in the use of home care services among Norwegians 70+ and projections towards 2050: The HUNT study 1995-2017.

BACKGROUND: Life expectancy (LE) is increasing worldwide, while there is lack of information on how this affects older individuals' use of formal home care services. AIM: We aimed to decompose LE into years with and without home care services and estimate projected number of users towards 2050 in Norway for people 70 years or older. METHODS: This study is based on a sample of 25,536 participants aged 70 years and older in the Trøndelag Health Study (HUNT) survey 2 (1995-1997), 3 (2006-2008), or 4 (2017-2019) linked with national data on mortality. Prevalence of home care services was standardised to the Norwegian population by age and sex. The Sullivan method was used to estimate expected years with and without home help services and nursing services for the years 1995, 2006 and 2016. Data from HUNT4 and Statistics Norway were used to estimate projected use of these services between 2020 and 2050. RESULTS: During 1995-2017, the use of home help services decreased from 22.6% to 6.2% (p < 0.001), and from 6.4% to 5.5% (p = 0.004) for home nursing services. Adjusted for age and sex, the use of home help services decreased significantly over time (p < 0.001), while home nursing services were stable (p = 0.69). LE at age 70 increased from 11.9 to 15.3 years in men (p < 0.05) during 1995-2017, and from 14.7 to 17.1 in women (p < 0.05). In the same period, the expected years receiving home help decreased from 2.6 to 1.1 in men (p < 0.05), and from 4.4 to 2.1 in women (p < 0.05). The expected years receiving home nursing increased from 0.6 to 0.9 in men (p < 0.05), and from 1.3 to 1.7 in women (p < 0.05). Projected numbers of people 70+ in Norway in need of either of these services were estimated to rise from 64,000 in 2020 to 160,000 in 2050. CONCLUSION: While overall life expectancy increased, the expected years receiving home help have decreased and home nursing slightly increased among the Norwegian population aged 70 years and older during 1995-2017. However, the substantial increase in the projected number of older adults using home care services in the future is an alert for the current health care planners.

Associations between unmet needs for daytime activities and company and scores on the Neuropsychiatric Inventory-Questionnaire in people with dementia: a longitudinal study.

OBJECTIVES: To examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia. METHODS: We included 451 people with mild or moderate dementia, from eight European countries, who were assessed three times over 12 months. Unmet needs were measured with the Camberwell Assessment of Need for the Elderly. Three sub-syndromes of the Neuropsychiatric Inventory-Questionnaire were regressed, one-by-one, against unmet needs for daytime activities and company, adjusting for demographic and clinical-functional covariates. RESULTS: Unmet needs for daytime activities were associated with more affective symptoms at baseline, six and twelve months, mean 0.74 (p < 0.001), 0.76 (p < 0.001) and 0.78 (p = 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.39 points, p = 0.007) and at six months follow-up (mean 0.31 points, p = 0.006). Unmet needs for company were associated with more affective symptoms at baseline, six and twelve months, mean 0.44 (p = 0.033), 0.67 (p < 0.001) and 0.91 (p < 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.40 points, p = 0.005) and at six months (mean 0.35 points, p = 0.002) follow-up. CONCLUSION: Interventions to reduce unmet needs for daytime activities and company could reduce affective and psychotic symptoms in people with dementia.

Development of best practice recommendations to enhance access to and use of formal community care services for people with dementia in Europe: a Delphi process conducted by the Actifcare project.

OBJECTIVES: Home-dwelling people with dementia and their informal carers experience barriers impeding access to community care services. This study is a part of the Actifcare project where eight countries participated. The aim was to achieve consensus on best practice recommendations for enhancing access to and use of formal community care services. METHOD: A Delphi consensus process was conducted. A total of 48 professional experts, 14 people with dementia and 20 informal carers rated the importance of 72 statements on a 7-point Likert scale. Consensus was based on the median and level of dispersion. RESULTS: Sixty-two statements reached consensus, resulting in three categories of recommendations. An appointed contact person was central in Recommendations to enhance access. Coordination and flexibility in setting and type of services were among the Recommendations to enhance use. Training of health care personnel and person-centred care were central Recommendations that can facilitate access or use indirectly. CONCLUSION: The Actifcare Best Practice Recommendations suggest practical measures that can be taken by decision makers to enhance access and use of community care services, and thereby enhance quality of care and quality of life for home dwelling people with dementia and their informal carers.

Profiles of Met and Unmet Needs in People with Dementia According to Caregivers' Perspective: Results from a European Multicenter Study.

OBJECTIVES: This exploratory study aimed at investigating profiles of care needs in people with mild to moderate dementia and examined variables associated with these profiles. DESIGN: A longitudinal international cohort study. SETTING AND PARTICIPANTS: The baseline data of 447 community-dwelling dyads of people with dementia and their caregivers from the Access to Timely Formal Care (Actifcare) Study were included for analysis. METHODS: A latent class analysis was applied to identify profiles of needs, measured with the Camberwell Assessment of Need for the Elderly as rated by the caregiver. We examined sociodemographic (eg, relative stress scale) and clinical characteristics (eg, neuropsychiatric inventory) associated with these profiles. RESULTS: Four distinct need profiles were identified through latent class analysis. These comprised a "no need" profile (41% of the sample), a "met psychological needs" profile (25%), a "met social needs" profile (19%), and an "unmet social needs" profile (15%). A larger impact of caregiving on the caregiver's life as indicated by a higher relative stress scale score was associated with the "unmet social needs" profile. CONCLUSIONS AND IMPLICATIONS: In this large European sample, there was a subgroup of persons with dementia with high "unmet social needs" whose caregivers simultaneously perceived high stress in their caregiving tasks. Identification of these profiles may help provision of appropriate support for these people.

Characteristics of patients assessed for cognitive decline in primary healthcare, compared to patients assessed in specialist healthcare.

Objective: The aim of this study was to describe patients assessed for cognitive decline in primary healthcare, compared to patients assessed in specialist healthcare and to examine factors associated with depression.Design: This was an observational study.Setting: Fourteen outpatient clinics and 33 general practitioners and municipality memory teams across Norway.Subjects: A total of 226 patients assessed in primary healthcare and 1595 patients assessed in specialist healthcare outpatient clinics.Main outcome measures: Cornell scale for depression in dementia (CSDD), Mini-Mental Status Examination (MMSE), Clock drawing test, Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE), Instrumental Activities of Daily Living, Personal Self-Maintenance Scale, Relatives' stress scale (RSS), and Neuropsychiatric Inventory Questionnaire (NPI-Q)Results: Patients assessed in primary healthcare were older (mean age 81.3 vs 73.0 years), less educated, had poorer cognition (MMSE median 22 vs 25), more limitations in activities of daily living (ADL), more behavioural and psychological symptoms of dementia (BPSD), more depressive symptoms (CSDD median 7 vs 5), more often lived alone (60% vs 41%) and were more often diagnosed with dementia (86% vs 47%) compared to patients diagnosed in specialist healthcare. Depression was associated with female gender, older age, more severe decline in cognitive functioning (IQCODE, OR 1.65), higher caregiver burden (RSS, OR 1.10) and with being assessed in primary healthcare (OR 1.53).Conclusion: Post-diagnostic support tailored to patients diagnosed with dementia in primary healthcare should consider their poor cognitive function and limitations in ADL and that these people often live alone, have BPSD and depression.Key pointsPeople diagnosed in Norwegian primary healthcare had more needs than people diagnosed in specialist healthcare. • They were older, less educated, had poorer cognitive functioning and activity limitations, more often lived alone, and had more BPSD and depression. • Depression was associated with being female, older, having cognitive decline, being assessed in primary care and the caregiver experiencing burden • Post diagnostic support for people with dementia should be tailored to the individual's symptoms and needs.

Interventions to enhance access to and utilization of formal community care services for home dwelling persons with dementia and their informal carers. A scoping review.

Objectives: Home dwelling people with dementia and their informal carers often do not receive the formal care services they need. This study examined and mapped the research regarding interventions to improve access and use of formal community care services.Method: This is a scoping review with searches in PubMed, CINAHL, PsychINFO, Medline, Cochrane Database of Systematic Reviews, Social Science Citation index and searches of grey literature in international and national databases. Studies were categorized according to the measure used to enhance access or use.Results: From international databases, 2833 studies were retrieved, 11 were included. Five studies were included from other sources. In total, 16 studies published between 1989 and 2018 were examined; seven randomized controlled trials, six pretest-posttest studies and three non-randomized controlled studies. Sample sizes varied from 29 to 2682 participants, follow-up from four weeks to four years. Five types of interventions were identified: Case management, monetary support, referral enhancing, awareness & information focused and inpatient focused. Only two studies had access or use of community services as the primary outcome. Fourteen studies, representing all five types of interventions, had positive effects on one or more relevant outcomes. Two interventions had no effect on relevant outcomes.Conclusion: The included studies varied widely regarding design, type of intervention and outcomes. Based on this, the evidence base for interventions to enhance access to and use of formal community services is judged to be limited. The most studied type of intervention was case management. More research is recommended in this field.

Do caregiver profiles predict the use of dementia care services? Findings from the Actifcare study.

Objectives: Previously developed dementia caregiver profiles defined by caregiver age and burden, have been associated with caregiver quality of life, depression and perseverance time. The current aim was to investigate whether these caregiver profiles could predict subsequent service use. In addition, non-personal (e.g. meals on wheels) and supportive services (e.g. Alzheimer café) in early dementia were investigated as predictors.Methods: A total of 451 dyads of people with dementia and their informal caregivers from eight European countries were followed for one year. People were included if they did not use formal (personal) care but were expected to do so within 1 year. Logistic regression analyses were used with four clusters of service use as dependent variables (home social care, home personal care, day care and admission). The independent variables were caregiver profiles, and non-personal and supportive services at baseline.Results: Caregiver profiles were significant predictors of service use; those experiencing high strain were more likely to use formal care. The use of low-intensity, less intrusive services at baseline significantly predicted the use of home personal care and admission at follow-up. The use of day care at follow-up was predicted by the baseline use of supportive services.Conclusion: Caregiver profiles are valuable predictors for service use: this knowledge can aid professionals in ensuring optimal access to services, which is important for maintaining independence at home. In addition, the use of supportive and less intrusive, non-personal services in the early stages of dementia is to be advised.

Is there equity in initial access to formal dementia care in Europe? The Andersen Model applied to the Actifcare cohort.

OBJECTIVES: In the current study, the Anderson model is used to determine equitable access to dementia care in Europe. Predisposing, enabling, and need variables were investigated to find out whether there is equitable access to dementia-specific formal care services. Results can identify which specific factors should be a target to improve access. METHODS: A total of 451 People with middle-stage dementia and their informal carers from eight European countries were included. At baseline, there was no use of formal care yet, but people were expected to start using formal care within the next year. Logistic regressions were carried out with one of four clusters of service use as dependent variables (home social care, home personal care, day care, admission). The independent variables (predisposing, enabling, and need variables) were added to the regression in blocks. RESULTS: The most significant predictors for the different care clusters are disease severity, a higher sum of (un)met needs, hours spent on informal care, living alone, age, region of residence, and gender. CONCLUSION: The Andersen model provided for this cohort the insight that (besides need factors) the predisposing variables region of residence, gender, and age do play a role in finding access to care. In addition, it showed us that the numbers of hours spent on informal care, living alone, needs, and disease severity are also important predictors within the model's framework. Health care professionals should pay attention to these predisposing factors to ensure that they do not become barriers for those in need for care.

Quality of Life, Care Resource Use, and Costs of Dementia in 8 European Countries in a Cross-Sectional Cohort of the Actifcare Study.

BACKGROUND: With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care. OBJECTIVE: To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs. METHODS: Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained. Formal and informal care use was multiplied by country specific unit prices of services. Needs were measured using the CANE and health-related quality of life (HRQOL) of the person with dementia (both self- and proxy-rated) and informal caregiver's quality of life using EQ-5D-5L, ICECAP-O, DEMQOL-U, and CarerQol utility scores. The association between costs and country, European region, and unmet needs was assessed using multi-level linear regression. RESULTS: Self-rated EQ-5D-5L utility score was higher than proxy-rated (0.84 and 0.71, respectively). Informal caregivers' utility score was 0.84. Across eight countries annual mean costs of formal and informal care were approximately € 17,000. Unmet needs were not associated with annual costs of care, nor with proxy-rated HRQOL, but were associated with self-rated HRQOL. CONCLUSION: We found varying relationships between unmet needs and quality of life, and no association between unmet needs and care costs, although the results were sensitive to various factors. Future research should further investigate the relation between unmet needs, quality of life and costs to generate a better understanding of the effects of (un)timely access to care.

The Validity of the Norwegian Version of the Cognitive Function Instrument.

BACKGROUND/AIMS: A timely diagnosis of dementia is important, and the Cognitive Function Instrument (CFI) is a newly developed instrument to screen for cognitive decline. The aim of this study was to evaluate the validity and internal consistency of the Norwegian version of the CFI. METHODS: We included 265 participants with dementia, mild cognitive impairment (MCI), subjective cognitive impairment (SCI), and a reference group without subjective or assessed cognitive decline. The participants and their relatives answered the self- and proxy-rated versions of the CFI. RESULTS: The Norwegian CFI had power to discriminate between people with dementia and with MCI, SCI, and the reference group. The proxy version had better power than the self-rated version in our participants (area under the curve [AUC] proxy-rated varying from 0.79 to 0.99, AUC self-rated varying from 0.56 to 0.85). CONCLUSION: The Norwegian CFI was found to be a useful, valid, and robust instrument.

Strategies to recruit and retain older adults in intervention studies: a quantitative comparative study.

Recruitment and retention of participants in randomized controlled trials (RCTs) drawn from the older population is challenging, and studies have shown that poor recruitment and retention may lead to biased samples and results. Several strategies to improve the participation of older adults in research are outlined in the literature. The objective was to identify factors associated with participation in an RCT aiming at preventing depressive symptoms and social isolation in a later phase following a stroke, in an older population living in their homes. Strategies to improve participation were applied in the RCT "Lifestyle intervention for older adults in rehabilitation after stroke: development, implementation and evaluation". Quantitative data collected on participants (n=99) and non-participants (n=56) in the trial were compared using statistical analyses. The findings are in line with earlier studies in that the participants were younger (p=0.01) and received less help in the home (p=0.01) than did non-participants. The results differ from earlier studies in that participants had a higher rate of depressive symptoms (participation rate was 57% with HAD depression scale score 0-2, 61% with score 3-4, 62% with score 5-6 and 79% with a score 7 or above). The findings also illustrate a poorer health-related quality of life among the participants in the role physical domain on Short Form-36 (p=0.01). The results indicate that the use of targeted strategies to enhance participation may lead to a less biased sample as well as the inclusion of more subjects who seem to meet the aims of the intervention.

Development of a person-centred lifestyle intervention for older adults following a stroke or transient ischaemic attack.

BACKGROUND: Older adults with mild to moderate stroke or transient ischaemic attack often experience anxiety, depression and reduced social participation in their daily lives. Interventions addressing the long-term consequences of stroke are needed. OBJECTIVE: To describe the process of developing a person-centred lifestyle intervention for older adults with stroke. METHODS: The Canadian Occupational Performance Measure was used to develop the content of the intervention. Lifestyle groups were implemented at senior centres once a week for nine months. Content analysis was used to analyse the intervention content. RESULTS: A total of 132 participants (median age 79 years, 55% women, 52% lived alone) were recruited from hospitals. The participants prioritized 392 occupational problems, mainly related to active recreation, household and community management, mobility, and socialization. The occupational issues were addressed in the group interventions. New themes also emerged in line with the participants' choices through group discussions, such as information on stroke and prevention of new strokes, outdoor mobility and transportation, "brain use" and memory. CONCLUSION: The study demonstrates the development of intervention following stroke, addressing its process, structure, and components. Whether the person-centred process increases the potential for enhancing participants' social participation and well-being should be evaluated in future studies.