Experiencing Loss and Planning Ahead Study

NCT03332979 | Completed Results

• 1 other identifier: 17/0477
• Study Type: observational
• Target: 150
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Grief

Keywords

pre-death grief; palliative care; dementia; caregiver; preparation for end of life

Outcome Measures

Primary Outcomes (1)

• Pre-death Grief in Dementia Caregiving

  Marwit-Meuser Caregiver Grief Inventory Short Form (MMCGI-SF) (Marwit and Meuser 2005). 18 items with a score range from 18-90. Higher scores indicate higher levels of grief from carers of people with dementia.

  Baseline

Secondary Outcomes (7)

• Knowledge of How Dementia Progresses

  Baseline

• Knowledge of the Person With Dementia's End of Life Preferences

  Baseline

• Advance Decisions in Place for Person With Dementia

  Baseline

• Communication With Healthcare Providers

  Baseline

• Social Support for Health Subscale of the Health Literacy Questionnaire

  Baseline

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Community sample. Carers will be recruited via a range of services (memory services/clinics, care homes, Admiral Nurses \[specialist dementia nurses\] and branches of the Alzheimer's Society). Recruitment will also occur through the Join Dementia Research website which is an online register where people living in the United Kingdom can express an interest in participating in dementia research and be invited to take part in studies based on matched eligibility criteria.

You may qualify if:

• 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.

You may not qualify if:

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

Sponsors & Collaborators

• University College, London: lead
• Alzheimer's Society: collaborator

Study Sites (1)

University College London

London, W1T 7NF, United Kingdom

Location

Related Publications (25)

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  PMID: 22985010 BACKGROUND

• Annear MJ, Toye CM, Eccleston CE, McInerney FJ, Elliott KE, Tranter BK, Hartley T, Robinson AL. Dementia Knowledge Assessment Scale: Development and Preliminary Psychometric Properties. J Am Geriatr Soc. 2015 Nov;63(11):2375-81. doi: 10.1111/jgs.13707. Epub 2015 Oct 27.

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• Bostock S, Steptoe A. Association between low functional health literacy and mortality in older adults: longitudinal cohort study. BMJ. 2012 Mar 15;344:e1602. doi: 10.1136/bmj.e1602.

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• Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology 3(2): 77-101, 2006.

  BACKGROUND

• Chan D, Livingston G, Jones L, Sampson EL. Grief reactions in dementia carers: a systematic review. Int J Geriatr Psychiatry. 2013 Jan;28(1):1-17. doi: 10.1002/gps.3795. Epub 2012 Mar 8.

  PMID: 22407743 BACKGROUND

• Dening KH, Jones L, Sampson EL. Preferences for end-of-life care: a nominal group study of people with dementia and their family carers. Palliat Med. 2013 May;27(5):409-17. doi: 10.1177/0269216312464094. Epub 2012 Nov 5.

  PMID: 23128905 BACKGROUND

• Hebert RS, Dang Q, Schulz R. Preparedness for the death of a loved one and mental health in bereaved caregivers of patients with dementia: findings from the REACH study. J Palliat Med. 2006 Jun;9(3):683-93. doi: 10.1089/jpm.2006.9.683.

  PMID: 16752974 BACKGROUND

• Hebert RS, Prigerson HG, Schulz R, Arnold RM. Preparing caregivers for the death of a loved one: a theoretical framework and suggestions for future research. J Palliat Med. 2006 Oct;9(5):1164-71. doi: 10.1089/jpm.2006.9.1164.

  PMID: 17040154 BACKGROUND

• Hebert RS, Schulz R, Copeland V, Arnold RM. What questions do family caregivers want to discuss with health care providers in order to prepare for the death of a loved one? An ethnographic study of caregivers of patients at end of life. J Palliat Med. 2008 Apr;11(3):476-83. doi: 10.1089/jpm.2007.0165.

  PMID: 18363491 BACKGROUND

• Hirschman KB, Kapo JM, Karlawish JH. Identifying the factors that facilitate or hinder advance planning by persons with dementia. Alzheimer Dis Assoc Disord. 2008 Jul-Sep;22(3):293-8. doi: 10.1097/WAD.0b013e318169d669.

  PMID: 18580595 BACKGROUND

• Lindauer A, Harvath TA. Pre-death grief in the context of dementia caregiving: a concept analysis. J Adv Nurs. 2014 Oct;70(10):2196-207. doi: 10.1111/jan.12411. Epub 2014 Apr 7.

  PMID: 24702153 BACKGROUND

• Marwit SJ, Meuser TM. Development of a short form inventory to assess grief in caregivers of dementia patients. Death Stud. 2005 Apr;29(3):191-205. doi: 10.1080/07481180590916335.

  PMID: 15816111 BACKGROUND

• Osborne RH, Batterham RW, Elsworth GR, Hawkins M, Buchbinder R. The grounded psychometric development and initial validation of the Health Literacy Questionnaire (HLQ). BMC Public Health. 2013 Jul 16;13:658. doi: 10.1186/1471-2458-13-658.

  PMID: 23855504 BACKGROUND

• Petty NJ, Thomson OP, Stew G. Ready for a paradigm shift? Part 2: introducing qualitative research methodologies and methods. Man Ther. 2012 Oct;17(5):378-84. doi: 10.1016/j.math.2012.03.004. Epub 2012 Apr 3.

  PMID: 22480949 BACKGROUND

• Romero MM, Ott CH, Kelber ST. Predictors of grief in bereaved family caregivers of person's with Alzheimer's disease: a prospective study. Death Stud. 2014 Jul-Dec;38(6-10):395-403. doi: 10.1080/07481187.2013.809031. Epub 2013 Oct 18.

  PMID: 24666146 BACKGROUND

• Sampson EL, Jones L, Thune-Boyle IC, Kukkastenvehmas R, King M, Leurent B, Tookman A, Blanchard MR. Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention. Palliat Med. 2011 Apr;25(3):197-209. doi: 10.1177/0269216310391691. Epub 2011 Jan 12.

  PMID: 21228087 BACKGROUND

• Schulz R, Boerner K, Klinger J, Rosen J. Preparedness for death and adjustment to bereavement among caregivers of recently placed nursing home residents. J Palliat Med. 2015 Feb;18(2):127-33. doi: 10.1089/jpm.2014.0309. Epub 2014 Dec 3.

  PMID: 25469737 BACKGROUND

• Schulz R, Mendelsohn AB, Haley WE, Mahoney D, Allen RS, Zhang S, Thompson L, Belle SH; Resources for Enhancing Alzheimer's Caregiver Health Investigators. End-of-life care and the effects of bereavement on family caregivers of persons with dementia. N Engl J Med. 2003 Nov 13;349(20):1936-42. doi: 10.1056/NEJMsa035373.

  PMID: 14614169 BACKGROUND

• Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, Grambow S, Parker J, Tulsky JA. Preparing for the end of life: preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage. 2001 Sep;22(3):727-37. doi: 10.1016/s0885-3924(01)00334-7.

  PMID: 11532586 BACKGROUND

• Tabachnick, B. G. and L. S. Fidell (1989). Using Multivariate Statistics, 2nd Edition. New York, Harper & Row.

  BACKGROUND

• Morris JC. The Clinical Dementia Rating (CDR): current version and scoring rules. Neurology. 1993 Nov;43(11):2412-4. doi: 10.1212/wnl.43.11.2412-a. No abstract available.

  PMID: 8232972 BACKGROUND

• Koenig HG, Büssing A. The Duke University Religion Index (DUREL): A Five-Item Measure for Use in Epidemological Studies. Religions 1: 78-85, 2010.

  BACKGROUND

• Moore KJ, Crawley S, Fisher E, Cooper C, Vickerstaff V, Sampson EL. Exploring how family carers of a person with dementia manage pre-death grief: A mixed methods study. Int J Geriatr Psychiatry. 2023 Mar;38(3):e5867. doi: 10.1002/gps.5867.

  PMID: 36862574 DERIVED

• Moore KJ, Crawley S, Vickerstaff V, Cooper C, King M, Sampson EL. Is preparation for end of life associated with pre-death grief in caregivers of people with dementia? Int Psychogeriatr. 2020 Jun;32(6):753-763. doi: 10.1017/S1041610220000289. Epub 2020 Apr 3.

  PMID: 32241317 DERIVED

MeSH Terms

Conditions

Dementia

Condition Hierarchy (Ancestors)

Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Mental Disorders

Results Point of Contact

• Title: Dr Kirsten Moore
• Organization: Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London

kirsten.moore@ucl.ac.uk

020 7679 9488

Study Officials

• Kirsten J Moore, PhD

  University College, London

  PRINCIPAL INVESTIGATOR

Publication Agreements

• PI is Sponsor Employee: Yes

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: November 1, 2017
• First Posted: November 6, 2017
• Study Start: January 11, 2018
• Primary Completion: January 31, 2019
• Study Completion: February 1, 2020
• Last Updated: October 19, 2020
• Results First Posted: October 19, 2020

Record last verified: 2020-10

Locations

GB (1)