Carer's experiences of supporting someone on a dementia inpatient ward
Research type
Research Study
Full title
Uncovering the experiences of carers during the stay of a person with dementia on an NHS mental health older adult dementia inpatient ward: an exploratory study
IRAS ID
319411
Contact name
Hannah Partridge
Contact email
Sponsor organisation
The University of Manchester
Duration of Study in the UK
1 years, 5 months, 27 days
Research summary
Research Summary
Dementia is the term used to describe difficulties with memory, problem-solving, behaviour and language. There are approximately 900,000 individuals in the United Kingdom (UK) with a diagnosis of dementia, and this is expected to increase to 1.6 million by 2040. With the rising rates of dementia, it is expected that more people will be accessing specialist dementia services. NHS mental health older adult dementia inpatient wards (referred to as dementia inpatient wards (DIW)) were developed to provide care for individuals with complex presentations of dementia or individuals who may pose a risk to themselves or others.
It is estimated that there are over 700,000 people in the UK that are informal (unpaid) carers for people with dementia. Previous research has explored carer experiences of supporting individuals with dementia in community care, hospital stays, and long-term care facilities, however, no studies have explored the views and experiences of carers supporting an individual with dementia on an NHS DIW.
Therefore, this study will explore the views and experiences of carers who support an individual with dementia during a stay on an NHS DIW. We will conduct semi-structured interviews with carers either face-to-face or via an online platform such as Microsoft Teams. Participants will be individuals who are the primary unpaid carer for someone with dementia who is on an NHS DIW.
The study aims to understand:
- General experience of providing care
- Carer experiences of involvement in care and decision-making
- The impact of the stay on carers wellbeing
As the prevalence of dementia increases, it is increasingly important to understand the impact of DIW stays on carers, to enable staff and clinicians, to better understand and support carers during this journey.This is a Greater Manchester study; funded by the University of Manchester Clinical Psychology doctorate programme.
Summary of results
Qualitative, semi-structured interviews were completed with 12 informal carers whose family member was currently admitted to an NHS mental health dementia inpatient ward in the Northwest of England. Interviews were analysed using reflexive thematic analysis.
Four main themes were identified from the interviews of carers experiences: (1) Initial adjustment and transition, (2) Becoming a visitor, (3) Receiving support and sharing expertise, and (4) Planning for the future. Fifteen sub-themes were also identified. Carers experienced traumatic events in the build-up to admission and felt overwhelmed, worried, guilty, and stressed during the stay, whilst others felt relieved. The ward environment was regarded as safe and practical – albeit ‘stark’. Staff care was regarded as high-quality and when available, carers appreciated the opportunity for support from Psychologists and carer groups. Communication with staff was mixed; however, receiving information leaflets, attending ward rounds, and informal conversations with staff were helpful. Future care planning was emotionally complex, and carers often felt excluded from this process. Key service recommendations are provided in the areas of: carer support and involvement in care, communication, and ward environment. Informal carers may benefit from additional information and support during the admission process. Dementia inpatient wards could do more to involve carers in future care planning and utilise carers expertise and knowledge about the person with dementia.REC name
North of Scotland Research Ethics Committee 2
REC reference
23/NS/0008
Date of REC Opinion
9 Mar 2023
REC opinion
Further Information Favourable Opinion