TY - JOUR

T1 - “We’re happy as we are”: the experience of living with possible undiagnosed dementia.

AU - Henley, Josie

AU - Hillman, Alexandra

AU - Jones, Ian Rees

AU - Woods, Bob

AU - MacLeod, Catherine

AU - Pentecost, Claire

AU - Clare, Linda

N1 - No embargo upon publication

PY - 2023/9

Y1 - 2023/9

N2 - It is estimated that a third of people in the United Kingdom (UK) 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 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.

AB - It is estimated that a third of people in the United Kingdom (UK) 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 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.

KW - dementia

KW - undiagnosed dementia

KW - service non-use

KW - older adults

KW - family care-givers

U2 - 10.1017/S0144686X21001495

DO - 10.1017/S0144686X21001495

M3 - Article

VL - 43

SP - 2041

EP - 2066

JO - Ageing and Society

JF - Ageing and Society

SN - 0144-686X

IS - 9

ER -