Carers' experience of Assistive Technology use in Dementia
Dementia is one of the greatest health and care priorities globally. Caring for someone with dementia is a challenge and often leads to negative psychological, physiological and financial consequences for informal carers (family members or friends). Many informal carers experience moderate to severe levels of burden. Advances in technology have the potential to assist people with dementia and their carers, through Assistive Technology (AT) devices such as electronic medication dispensers, robotic devices and motion detectors. However, little is known about informal carers’ experience and the impact of these technologies on them.
This project is part of doctoral research and aims to investigate the impact and experience of informal carers of persons with dementia, who live at home and use AT. This is a multiple method research study consisting of two parts.
This research study has been granted ethical approval from the University of Oxford Research Ethics Committee under reference R57703/RE001.
Part 1 of the study will include semi-structured interviews with people caring for someone with dementia. The people included in this study will be informal carers (family/friends/neighbours) of a person with dementia. The caring role could involve helping with personal care, shopping, housework, financial or emotional support.
The aim of part 1 is to identify:
- how carers use electronic Assistive Technology (AT) and what types of AT they use
- the benefits and disadvantages of AT
- the facilitators or barriers to using AT
- the support carers need to use AT.
This will be used to develop a carer experience questionnaire focused on informal carers’ use of AT (CATEQ).
Each participant is expected to participate in the study for no longer than 2.5 hours (including up to 30 minutes for explanation and consent, 10 minutes to arrange the interview and 60 to 90 minutes for the qualitative interview) in total. Participants will have at least 24 hours before deciding to participate in the study. They will receive information about the study and written consent will be sought to participate in the interview.
Interviews can take place at the participant’s home, their place of work, by telephone (if it is the only convenient method), or at the University of Oxford. The interview location and time will be arranged in discussion with the participant to suit their convenience and preference.
Interviews will be conducted by Vimal Sriram (DPhil student) who has training in ethics, taking consent and conducting qualitative interviews. Both DPhil supervisors are experienced in conducting and supervising qualitative research projects.
The aim of this part of the research study is to explore the impact of AT on carer burden and wellbeing.
It will include a survey (online or postal) using the Carers Assistive Technology Experience Questionnaire (CATEQ) and validated carer stress and burden measure - the Zarit Burden Interview and semi-structured interviews with informal carers of persons with dementia.
Participants will be informal carers who meet the advertised eligibility criteria.
Survey data collection will be done online through the Bristol Online Survey Tool or Qualtrics with the additional option of postal surveys for participants on request. It should not take more than 30 minutes to complete the survey.
At the point of commencing the survey participants will be informed of the aim of the study and how they can consent or withdraw at any point during the survey, and arrangements for data management.
Further interviews: interview data collection with a purposefully selected number of participants, who complete the survey, will be through semi-structured interviews.
As in part 1, each participant is expected to participate in the study for no longer than 2.5 hours in total. Participants will have at least 24 hours before deciding to participate in the study. They will receive information about the study and written consent will be sought to participate in the interview.
- Aged 18 years or above
- Providing at least 10 hours care to the person with dementia per week
- Person with dementia living in their own home
- Informal carers to a person with dementia who has used at least one AT device at home within the past year
- Able to speak English.
- Below 18 years of age
- Unable to communicate in English
- People who are unable or unwilling to consent to participation
- Adults caring for someone who does not have a dementia.
In addition to the criteria for the qualitative interviews above:
- Have access to a computer or smart-phone device with access to the internet or able to complete the questionnaire in paper format
- Able to read English.
- Unable to read English
- Those who participated in the pilot evaluation of the questionnaire will not be included in part 2 of the research study.