Abstract
Person-centred care is internationally recognised as best practice for the care of people with dementia. Personal information documents for people with dementia are proposed as a way to support person-centred care in healthcare settings. However, there is little research about how they are used in practice. The aim of this study was to analyse healthcare staff 's perceptions and experiences of using personal information documents, mainly Alzheimer's Society's 'This is me', for people with dementia in healthcare settings. The method comprised a secondary thematic analysis of data from a qualitative study, of how a dementia awareness initiative affected care for people with dementia in one healthcare organisation. The data were collected through 12 focus groups (n = 58 participants) and 1 individual interview, conducted with a range of healthcare staff, both clinical and non-clinical. There are four themes presented: understanding the rationale for personal information documents; completing personal information documents; location for personal information documents and transfer between settings; impact of personal information documents in practice. The findings illuminated how healthcare staff use personal information documents in practice in ways that support person-centred care. Practical issues about the use of personal information documents were revealed and these may affect the optimal use of the documents in practice. The study indicated the need to complete personal information documents at an early stage following diagnosis of dementia, and the importance of embedding their use across care settings, to support communication and integrated care.
Highlights
Most people with dementia have complex comorbidities and they are more likely to be admitted to hospital than people without dementia, who are of a similar age and health condition; an estimated third of hospital inpatients in high income countries have dementia (Alzheimer’s Disease International [ADI], 2016)
Understanding the rationale for personal information documents Participants expressed that personal information documents for people with dementia, such as ‘This is me’, could help them to focus on the person, rather than the medical condition: I think as soon as you find out someone has got dementia you relate everything back to the disease and that’s what they don’t want, to be defined by dementia, that's the whole point of ‘This is me’, remember who I am, not the illness that I have (Nurses8) Nurses discussed that ‘This is me’ provided ‘a back story for the person’ (Nurses4) and that ‘This is me’ could help staff to understand something of the person’s life, for example, their previous profession
Staff in several focus groups discussed that the information recorded could act as a communication tool, providing information that they could use when a person is upset: When you see a patient with dementia who is distressed, it could be a simple fact that they want something but they can’t effectively communicate it to you
Summary
Most people with dementia have complex comorbidities and they are more likely to be admitted to hospital than people without dementia, who are of a similar age and health condition; an estimated third of hospital inpatients in high income countries have dementia (Alzheimer’s Disease International [ADI], 2016). The process of hospital care is more complicated for people with dementia (ADI, 2016) and the unfamiliar, busy and task focused hospital environment, along with the person’s illness or injury, can increase both dementia symptoms and risk of delirium (RCP, 2017). The presence of dementia affects the person’s treatment, care and recovery in hospital (Health Foundation, 2011) and people with dementia have lengthier hospital stays (ADI, 2016). Whilst more effective care at home could reduce hospital admissions, the growing older population and new treatments available mean that older people with dementia will continue to be core service users in hospitals (RCP, 2013). Hospitals must be able to effectively meet the needs of people with dementia (Oliver, Foot & Humphries, 2014) and provide the high quality care needed (ADI, 2016). Care pathways for people with dementia, the care environment, ethos and resources in hospital all need improving (Houghton, Murphy, Brooker & Casey, 2016)
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