Compassion Pilot Intervention Study to Enhanced Integrated Care for People With Severe Memory Problems

NCT02840318 | Completed

• 1 other identifier: 14/007
• Study Type: interventional
• Target: 41
• Locations: 1 country
• Sites: 1

Brief Summary

The investigators developed the theory-driven 'Compassion Intervention', an integrated, interdisciplinary approach to address existing gaps in end-of-life care for people with advanced dementia. The Intervention consists of two core components: facilitation of an integrated, multi-disciplinary approach to assessment, treatment and care; and education, training and support for formal and informal carers. The intervention is implemented by an Interdisciplinary Care Leader. The primary aim is to understand how the Intervention operates in two care homes (with nursing support) in two different health and social care economies; one in the Camden Commissioning Group and one in the Barnet Commissioning Group, both in London, UK. The secondary aim is to collect preliminary outcome data and estimate the cost of employing an Interdisciplinary Care Leader to inform further evaluative studies. The final aim is to check that the Intervention causes no harm to residents and their family carers.

Conditions

Dementia

Keywords

Terminal care; Residential facilities; Integrated health care systems; Interdisciplinary health team; Palliative care

Outcome Measures

Primary Outcomes (1)

• Pain Assessment in Advanced Dementia

  Warden, 2003

  up to 6 months

Secondary Outcomes (5)

• Waterlow Scale

  up to 6 months

• Neuropsychiatric Inventory

  up to 6 months

• Cohen Mansfield Agitation Inventory

  Monthly up to 6 months

• Symptom Management at End of Life in Dementia

  up to 6 months

• Quality of Life in Late Stage Dementia Scale

  up to 6 months

Study Arms (1)

Compassion Intervention

EXPERIMENTAL

Coordinated by the ICL who co-ordinates key activities at each site to address the two core components of the Intervention. Component 1 activities include: (a) person-centred assessment of residents, focussing on their physical, psychological, emotional and social needs, (b) meetings of the core care team (General practitioner, care home nurse and/or manager and ICL) and (c) meetings of the wider multidisciplinary care teams (including care home staff, ICL, and external healthcare professionals such as geriatrician, palliative care, mental health etc). Activities to facilitate component 2 include: (d) staff training sessions, education and support for staff and family carers. Training sessions are run by the ICL and logistics of training is planned at core meetings.

Other: Compassion Intervention

Interventions

Compassion Intervention OTHER

See arm description

Compassion Intervention

Eligibility Criteria

• Age: 65 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Older Adult (65+)

You may qualify if:

• residents residing in one of the two participating care homes;
• memory problems indicating a diagnosis of dementia according to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV);
• Functional Assessment Staging scale (FAST) grade 6a (difficulty putting on clothing) and above (unable to hold head up) (Reisberg, 1988);
• Comorbidities or unmanaged symptoms such as agitation, recurrent infections, pain and pressure ulcers.

You may not qualify if:

• Residents who indicate either verbally or non-verbally that they do not wish to participate.
• Residents who are moribund, in a coma, or those where there are clinical concerns that may preclude them being approached.

Sponsors & Collaborators

• University College, London: lead
• Marie Curie Hospice, Belfast: collaborator

Study Sites (1)

University College, London

London, Select One..., W1T 7NF, United Kingdom

Location

Related Publications (20)

• Chambers DA, Glasgow RE, Stange KC. The dynamic sustainability framework: addressing the paradox of sustainment amid ongoing change. Implement Sci. 2013 Oct 2;8:117. doi: 10.1186/1748-5908-8-117.

  PMID: 24088228 BACKGROUND

• Charlson ME, Pompei P, Ales KL, MacKenzie CR. A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chronic Dis. 1987;40(5):373-83. doi: 10.1016/0021-9681(87)90171-8.

  PMID: 3558716 BACKGROUND

• Cohen-Mansfield J, Marx MS, Rosenthal AS. A description of agitation in a nursing home. J Gerontol. 1989 May;44(3):M77-84. doi: 10.1093/geronj/44.3.m77.

  PMID: 2715584 BACKGROUND

• Cummings JL, Mega M, Gray K, Rosenberg-Thompson S, Carusi DA, Gornbein J. The Neuropsychiatric Inventory: comprehensive assessment of psychopathology in dementia. Neurology. 1994 Dec;44(12):2308-14. doi: 10.1212/wnl.44.12.2308.

  PMID: 7991117 BACKGROUND

• Elliott M, Harrington J, Moore K, Davis S, Kupeli N, Vickerstaff V, Gola A, Candy B, Sampson EL, Jones L. A protocol for an exploratory phase I mixed-methods study of enhanced integrated care for care home residents with advanced dementia: the Compassion Intervention. BMJ Open. 2014 Jun 17;4(6):e005661. doi: 10.1136/bmjopen-2014-005661.

  PMID: 24939815 BACKGROUND

• Fitch K, Bernstein S, Aguilar M, Burnand B, LaCalle J, Lázaro P, et al. The RAND/UCLA Appropriateness Method User's Manual Santa Monica: RAND, 2001.

  BACKGROUND

• Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol. 2013 Sep 18;13:117. doi: 10.1186/1471-2288-13-117.

  PMID: 24047204 BACKGROUND

• Grol RP, Bosch MC, Hulscher ME, Eccles MP, Wensing M. Planning and studying improvement in patient care: the use of theoretical perspectives. Milbank Q. 2007;85(1):93-138. doi: 10.1111/j.1468-0009.2007.00478.x.

  PMID: 17319808 BACKGROUND

• Jones L, Candy B, Davis S, Elliott M, Gola A, Harrington J, Kupeli N, Lord K, Moore K, Scott S, Vickerstaff V, Omar RZ, King M, Leavey G, Nazareth I, Sampson EL. Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach. Palliat Med. 2016 Mar;30(3):279-95. doi: 10.1177/0269216315605447. Epub 2015 Sep 9.

  PMID: 26354388 BACKGROUND

• Jones L, Harrington J, Scott S, Davis S, Lord K, Vickerstaff V, Round J, Candy B, Sampson EL. CoMPASs: IOn programme (Care Of Memory Problems in Advanced Stages of dementia: Improving Our Knowledge): protocol for a mixed methods study. BMJ Open. 2012 Nov 27;2(6):e002265. doi: 10.1136/bmjopen-2012-002265. Print 2012.

  PMID: 23187973 BACKGROUND

• Kiely DK, Volicer L, Teno J, Jones RN, Prigerson HG, Mitchell SL. The validity and reliability of scales for the evaluation of end-of-life care in advanced dementia. Alzheimer Dis Assoc Disord. 2006 Jul-Sep;20(3):176-81. doi: 10.1097/00002093-200607000-00009.

  PMID: 16917188 BACKGROUND

• Reisberg B. Functional assessment staging (FAST). Psychopharmacol Bull. 1988;24(4):653-9. No abstract available.

  PMID: 3249767 BACKGROUND

• Volicer L, Hurley AC, Lathi DC, Kowall NW. Measurement of severity in advanced Alzheimer's disease. J Gerontol. 1994 Sep;49(5):M223-6. doi: 10.1093/geronj/49.5.m223.

  PMID: 8056941 BACKGROUND

• Warden V, Hurley AC, Volicer L. Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. J Am Med Dir Assoc. 2003 Jan-Feb;4(1):9-15. doi: 10.1097/01.JAM.0000043422.31640.F7.

  PMID: 12807591 BACKGROUND

• Waterlow J. Pressure sores: a risk assessment card. Nurs Times. 1985 Nov 27-Dec 3;81(48):49-55. No abstract available.

  PMID: 3853163 BACKGROUND

• Weiner MF, Martin-Cook K, Svetlik DA, Saine K, Foster B, Fontaine CS. The quality of life in late-stage dementia (QUALID) scale. J Am Med Dir Assoc. 2000 May-Jun;1(3):114-6.

  PMID: 12818023 BACKGROUND

• Wimo A, Winblad B. Resource Utilization in Dementia: RUD Lite. Brain Aging. 2003;3:48-59.

  BACKGROUND

• Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980 Dec;20(6):649-55. doi: 10.1093/geront/20.6.649. No abstract available.

  PMID: 7203086 BACKGROUND

• Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983 Jun;67(6):361-70. doi: 10.1111/j.1600-0447.1983.tb09716.x.

  PMID: 6880820 BACKGROUND

• Moore KJ, Candy B, Davis S, Gola A, Harrington J, Kupeli N, Vickerstaff V, King M, Leavey G, Nazareth I, Omar RZ, Jones L, Sampson EL. Implementing the compassion intervention, a model for integrated care for people with advanced dementia towards the end of life in nursing homes: a naturalistic feasibility study. BMJ Open. 2017 Jul 10;7(6):e015515. doi: 10.1136/bmjopen-2016-015515.

  PMID: 28694253 DERIVED

MeSH Terms

Conditions

Dementia

Condition Hierarchy (Ancestors)

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

Study Officials

• Caroline (Louise) Jones, MB FRCP

  University College, London

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 19, 2016
• First Posted: July 21, 2016
• Study Start: February 1, 2014
• Primary Completion: December 1, 2014
• Study Completion: December 1, 2015
• Last Updated: August 16, 2016

Record last verified: 2014-02

Data Sharing

• IPD Sharing: Will not share

Locations

GB (1)