What needs to be addressed in caring for people living with dementia? A multi-faceted evidence on financial, psychological, and physical health issues in dementia care

BackgroundDementia is a progressive neurodegenerative condition with 60.2 million cases worldwide. The disease has financial, psychological, and physical health implications for people affected and their carers. There is a dearth of literature exploring financial issues experienced by carers and persons living with dementia beyond the loss of income, while psychological implications have been studied in silos, and physical health implications have mostly focused on sleep deprivation. Our study aims to provide multi-faceted evidence on all three issues experienced by persons living with dementia and their carers.MethodsSemi-structured interviews, congruent with the social constructivist framework, were administered, recorded on Microsoft Teams, and transcribed for eight carers, four persons living with dementia excepts, and one participant who was both a carer and a person living with dementia. Participants were recruited using a purposive sampling approach through the local community-led friendly cafe groups in Essex. Transcripts were anonymised, and thematic analysis was undertaken.ResultsResponses of the carers revealed concerns about the future financial situation, the expenses on respite care, and replacing the household equipment. Psychological implications for carers included a change in role from partner to carer, resulting in loneliness, loss of friends, coping with the deterioration in behaviour of the person living with dementia except, and relentlessness of care. One major physical health implication identified was exhaustion and the need to extend physical support, such as lifting the person living with dementia from a fall. Persons living with dementia hardly expressed concerns on the financial implications, though they narrated denial of diagnosis, feeling of loss of independence, and the changes in behaviour associated with dementia, among the psychological implications. The physical implications of the persons living with dementia largely included physical deterioration. Other issues, including feeling at loss of access to information, post-diagnostic medical support, and designs of public toilets, were also elicited from the interviews.ConclusionGiven the interdependent nature of the issues experienced by persons living with dementia and their carers, an integrated approach to post-diagnostic support for information dissemination, counselling, and training for carers could help reduce both the physical and mental burden of dementia on patients and carers.