Experiencing Loss and Planning Ahead Study

The course of dementia over many years, gradual losses and uncertain life expectancy can lead to grief amongst family and friend carers. This study aims to examine the relationship between carers' feelings of grief before the death of a person with dementia and how well carers are prepared for that death. The study involves completing questionnaires with 150 carers of people with dementia (at home or in a care home). Twenty of these carers will be purposively selected to complete additional semi-structured questions to further explore the research questions. The questionnaires will examine whether being prepared for end of life is linked to having lower levels of grief. Preparation will be measured by important factors shown in research including: knowledge of dementia progression; knowledge of the person with dementia's end of life preferences; communication with healthcare professionals; family support; and having a Power of Attorney or advance directives. The study is part of a larger study that will also involve surveys with service providers and developing a resource for carers. The study will provide important insights into how we can better support grieving carers and help them plan and prepare for end of life care.

Grief is often felt before the death of a friend or relative with dementia. Grief before the death can be triggered by losses associated with dementia causing carers to experience sorrow, anger, yearning and acceptance that can wax and wane from diagnosis to the end of life. It occurs due to the lengthy and uncertain disease trajectory; compromised communication between the person with dementia and family and friends; and changes in relationship quality and carer freedom. Between 47-71% of family and friends of people with dementia (referred here as 'carers') experience grief before the death and 20% experience complicated grief after the death. Higher grief prior to death is associated with complicated grief after death, so emotional support during care rather than solely after the death may be beneficial.

Preparation for end of life has medical, psychosocial, spiritual and practical components, including having a family member or healthcare professional to help make decisions, knowing what to expect about the terminal condition and having finances in place. Good communication with healthcare providers to discuss prognosis, treatments, cultural, spiritual and practical issues; and dealing with family conflict is critical. Preparation for end of life is associated with a lower likelihood of complicated grief in bereavement but has not been explored in the context of grief before the death. Preparation for end of life is influenced by socioeconomic factors associated with health literacy. In the UK a third of older adults have difficulty interpreting basic health information. Despite the potential benefits of end of life discussions with carers, there are many barriers to such discussions. Carers struggle to formalise in writing future wishes on behalf of the person with dementia and professionals tend to be reluctant to initiate end of life discussions. Family conflict can deter end of life decision making. Factors reflecting preparation for end of life are potentially modifiable suggesting that improving preparation could reduce grief before the death.

This study aims to examine the relationship between family and friend carers' feelings of grief before the death of a person with dementia and how well carers are prepared for that death. The hypothesis that will be tested is that modifiable factors indicating preparation for end of life are associated with lower grief before the death in carers of people with dementia. The modifiable factors reflecting preparation for end of life include: carers' having a good knowledge of dementia progression; high health literacy; a lasting (enduring) Power of Attorney; knowing the end of life wishes of the person with dementia; being satisfied with support from their social network.

Knowing which modifiable factors reflecting preparation for end of life are most closely associated with grief before the death will inform the development of a resource for carers with the potential to reduce carer distress during the lifetime of the person with dementia, bringing benefits for the person with dementia as well as their carer. It will enable discussions to ensure care at the end of life is planned and in accordance with the person's wishes; and may reduce the prevalence of complicated grief after the death of the person with dementia.

Secondary objectives are to: examine the prevalence and severity of grief before the death in carers of people with dementia; identify which modifiable factors reflecting preparation for end of life are most strongly related to grief before the death; examine the extent to which carers feel prepared for the future and end-of-life care for their relative with dementia; explore whether carers recognize grief during caring and what supports they think would be helpful; identify unmet needs for information about end of life symptoms and emotional support for carers; and explore how carers experience and cope with changes in grief over time.

This is a cross-sectional study using mixed methods. One hundred and fifty carers of people with a diagnosis of dementia will be recruited to take part in the study. They will take part in a quantitative interview with a range of questionnaires. Participants will be recruited through community and healthcare services and via the Join Dementia Research Register in the United Kingdom. Eligible carers will be sent invitations to participate. Flyers in these services or presentations at family meetings of these services are other potential avenues for recruitment. Participants will provide written consent prior to the interview.

A sub-sample of carers will be asked whether they would also like to take part in an additional qualitative semi-structured interview to enable more in-depth exploration of some of the secondary objectives. The interview will explore the dynamic and changing nature of grief over time, how carers identify with the concept of grief and whether they consider they are going through a grief experience. It will also examine what supports they have found helpful and what they perceive to be unmet information and support needs and possible programs/resources that might address these needs. Qualitative interviews will be audio-recorded with permission from the participant on an encrypted digital recorder and then transcribed verbatim by the research team. Participants will be purposively selected to take part in these interviews to provide a mix of responses representing male and female participants, adult child and spouse participants, different ethnicity as well as carers of people at different severity of dementia. We will aim to interview carers until saturation of data is reached. We envisage this will be between 15-20 carers. Once we have achieved saturation we will cease inviting carers to take part in this component of the study.

For the quantitative analysis, multivariable regression analysis will be used to explore the impact of the five modifiable factors reflecting preparation for end of life on the primary outcome of pre-death grief. We will control for potential confounding variables including: dementia severity, relationship type (spouse/partner, a child or another relationship), gender, care home status (whether or not the person with dementia is living at home or in a care home), and religiosity. There are ten potential co-variates to be included in the model. A sample of 15 participants per co-variate is preferable while ten may be sufficient. We will aim to recruit 150 participants for an adequately powered analysis.

For the qualitative analysis audio-recording will be transcribed verbatim and entered into NVivo qualitative software package (QSR International) to support data coding. Data will be thematically analysed by coding chunks of text and grouping these codes into themes and sub-themes that address the study objectives. Two researchers will independently code and analyse each interview independently and then compare codes and themes to ensure rigour in analysis. Discrepancies will be discussed until consensus on themes is reached. Interviews will be coded as collected to enable subsequent interviews to draw on and explore themes arising. While we aim to recruit carers from a mix of categories (gender, relationship type and dementia severity) we will not be able to make comparisons between groups because of the small numbers representing each group (eg there may be only one male son caring for someone with mild dementia). The themes identified will help to draw out individual experiences in relation to carer grief and access to supports to supplement and expand the quantitative data.

Eligibility Criteria:
Inclusion Criteria:

* Carers of people with dementia providing practical, social, emotional or supervisory support to a friend or family member. This will include carers of people with dementia living at home or in a care home. Carers will be 18 years of age or over and living in England. The person they care for will have received a formal diagnosis of any dementia related disease.

Exclusion Criteria:

* Carers who are not able to communicate in English or who do not have capacity to provide informed written consent.