Exploring the information needs of people with mild dementia and their care partner, post-diagnosis at a Memory Clinic.

Abstract

Background It is essential that information needs are met throughout the dementia continuum to improve the quality of life of both the care partner and person with dementia. A crucial information opportunity is soon after diagnosis to enable both parties to make sense of the diagnosis and plan for the future. Limited research exists on identifying the information needs of patients and their care partner post-diagnosis of dementia, particularly from the perspective of people with dementia, and there has been none identified involving a New Zealand Memory Clinic. Aims This study aimed to explore the information needs of people with dementia and their care partner, and their experience of gaining verbal and printed information following the diagnosis of dementia at the Canterbury District Health Board (CDHB) Memory Clinic. The broader objective is to use the findings to inform clinical practice. Methods This study utilised the qualitative Appreciative Inquiry (AI) research framework. The sample was randomly selected and comprised of six dyads of people diagnosed with dementia who attended a Memory Clinic in 2016 and their care partners. Data were collected through one-to-one semi-structured interviews and thematically analysed. Findings The attitudes of the healthcare professional had a positive or negative effect on how care partners experienced receiving information. The healthcare professional’s attitude was less of an issue for the person living with dementia; however, the person with dementia valued being given information in a clear and easy to understand way. Information needs are individual regarding amount, format and environment, but a strong theme was that more information is needed about progression at the mild stages of dementia, to allow the person to plan for the future. All of the care partners highlighted the stress they were under and, despite finding the local dementia organisation beneficial for support and information, there was a need for ongoing Memory Clinic follow-up. Conclusions This study contributed to the minimal research available and identified that people living with dementia and their care partners have individual information needs, and that it is essential to meet these needs to enable the person with dementia to live well. Some people living with dementia want more information on their diagnosis; however, many are reliant on their care partners for information. Healthcare professionals also need to be aware that many care partners of those in the mild stage are experiencing significant carer stress and need ongoing, face-to face contact and information post-diagnosis, to enable them to meet the changing needs of the person with dementia throughout the continuum. The number of people living with dementia is set to triple in the next thirty years: therefore, it is essential that healthcare professionals identify, and be flexible and respond to, the individual’s information needs, to reduce carer stress and improve the quality of life of people with dementia.