It is estimated that a third of people in the United Kingdom with signs of dementia are living without a formal diagnosis. In Wales, the proportion is nearly half. Some explanations for the gap between prevalence of dementia and number of diagnoses include living with a long-term partner/spouse and systemic barriers to diagnosis. This study recruited participants from the Cognitive Function and Ageing Studies-Wales (CFAS-Wales) cohort, randomly selected from people aged over 65 living in two areas of Wales, who met study criteria for a diagnosis of dementia and did not have a record of a formal diagnosis in general practice records. We aimed to understand more about the contexts and circumstances of people who live with and cope with cognitive difficulties without having a formal diagnosis of dementia. We conducted qualitative interviews with six participants and their spouses, and additionally with four family members of three invited people who were unable to take part. Themes were generated using thematic analysis. We present the argument that there is an adaptive response to low service levels and a complex interaction between the expectations of levels of service, perceptions of the legitimacy of cognitive problems and the right to make demands on services. This paper concludes that more could be done to address barriers to diagnosis and treatment services for those living with symptoms of dementia, but that the value placed on diagnosis by some individuals might be lower than anticipated by government policy.

Community health-care services for older, home-dwelling persons with dementia tend to be underutilised. Family care-givers provide substantial care, and they often arrange for and co-ordinate health-care services on behalf of persons with dementia. The aim of this study was to examine family care-givers’ knowledge of unused services and their self-reported reasons for non-use of such services. We gathered cross-sectional survey data from 430 family care-givers of older persons with dementia in Northern Norway. Multinomial logistic regression analysis was used to identify predictors of family care-givers’ knowledge of unused services. An open-ended question regarding reasons for non-use of services was analysed by thematic text analysis. Characteristics of family care-givers (e.g. education level) and factors related to the care-giving circumstances (e.g. negative impact of care-giving) predicted family care-givers’ knowledge of unused services. Reasons for non-use of services were multifaceted and complex, and were related to attributes of the person with dementia and/or the family care-giver (e.g. reluctance to use services) and/or the health-care services (e.g. low quality). Although services were unused, several family care-givers indicated substantial needs for the services. Strategies aimed at addressing the non-use of services should emphasise individuals’ and families’ needs and the adaptation of information about available services and their benefits for both care recipients and family care-givers. A relationship-centred care approach is thus recommended in dementia care.

Background: Despite the need for community services to support the intensive levels of care provided by dementia family caregivers, findings consistently indicate low rates of service utilization. This study aims to explore the extent of service use and examine the factors that may influence the use of services in a sample of family caregivers of Persons With Dementia (PWD).

Methods: Two hundred and seventy-two family caregivers completed a questionnaire assessing caregiver burden, knowledge and use of services, dementia severity, frequency of problem behaviors and socio-demographic characteristics.

Results: The rate of service use was modest with 39.9% using any of the available services. Reasons for non-use included lack of time (26.2%), perceived lack of need (18.5%), and presence of domestic help (21%). Separate regression models were evaluated to identify factors associated with caregiver service use and PWD service-use. Caregiver employment status (OR = 0.53, CI = 0.30–0.94) and knowledge of available services (OR = 4.22, CI = 2.23–7.98) contributed significantly to the model distinguishing caregiver service users from non-users. Knowledge of available services (OR = 2.14, CI = 1.23–3.71) was the only significant predictor of service use targeted at the PWD.

Conclusions: Given that knowledge significantly increased the odds of service use, strategies should be designed to raise awareness about the availability of dementia support services in the community and provide a deeper understanding about the value of such services. Future research should employ larger sample sizes and explore factors not measured in this study that might potentially better explain use of services.