Experiencing loss and planning ahead study (ELPAS)
Family and friends caring for someone with dementia can find looking after someone challenging. Many struggle with losses that occur during dementia. Some feel they can no longer do things they used to or feel grief in having lost parts of their relationship with the person with dementia. Few studies have considered how we can better support people who are going through losses in dementia.
This study is looking at how carers cope with the emotional aspects of caring for someone living with dementia, and how they prepare for the future.
What are the main aims of the study?
We expect that having good communication with healthcare professionals, planning for the future and for end of life and knowing the wishes of the person with dementia may help people manage losses. This study is looking at how these factors impact on carer grief. By identifying factors that can be changed, we can learn how to provide better information, training and support to family and friends.
What does it involve for a participant?
Participation involves a face-to-face interview in a location of the participant’s choice, such as their own home or another quiet location. The interview includes questionnaires that explore coping styles, mood, communication with health professionals, current support, and whether the person with dementia has any documented advance decisions about wishes they may have towards the end of life.
How long is the study for?
Participation in the ELPAS study involves a one-off interview which will take up to 2 hours to complete.
Some participants might be asked to take part in an additional interview, to discuss coping and support needs in more depth. This second interview will take up to one hour to complete. The additional questions can be asked on the same day as the first interview, or can be arranged for a separate day if preferred. This can be decided on the day of the interview.
What do you hope the outcomes of the study will be?
The study will increase understanding of how we can better support grieving carers and help them plan and prepare for end of life care. We will develop and test a resource for family carers based on information sourced from these interviews. We hope this resource will help enable discussions to ensure care at the end of life is planned and is in accordance with the person’s wishes. Participants will receive a summary of key findings.
Where is the study based?
The ELPAS study is based at University College London. Interviews will take place in participant’s home or a location of their choice.
Who can take part in the study?
We are looking for family or friends who support someone with dementia who live at home or in a care home. Participants would be providing practical, emotional or supervisory support to someone with dementia.
Participants must be 18 years of age or over and living in England. Participants must also be able to read and understand English and have the capacity to understand what the research is about. The person they care for must have received a formal diagnosis of any dementia-related disease.
You can see if you are eligible for this study or others around the nation by logging into your Join Dementia Research account.
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