Project toolkit

End of life care for people with dementia

The following documents provide the basis of the tools used to collect the data for our evaluation of the services available to people with dementia within the locality that we reviewed.

The key steps in the process are:

  1. Identify key stakeholders within your locality
  2. Form a steering group with representation from key stakeholders and others involved in the care of people with dementia within your locality
  3. Agree project methodology with the steering group – seek their advice and support in the identification of suitable participants to interview and review (see project protocol attached)
  4. Arrange and carry out carer interviews (appendix 1,2,3,4), focus group and 1 to 1 meetings (appendix 5,6,7)and case note reviews (appendix 9 and 10)
  5. Review and synthesise date from all sources in order to identify pathway
  6. Carry out thematic analysis
  7. Economic analysis of case note reviews*
  8. Write up report*
  9. Present to steering group for identification and agreement of recommendations
  10. Complete final report and feedback to all project participants including staff and carers approached during the course of the service evaluation

* for examples please look at

The information collected will enable a baseline of the care pathway within your locality for people with dementia and identification of the barriers to good care.

This methodology is a service evaluation and not a research study. It does not require ethical approval – however it will require approval and support from local clinical governance departments within health and social care organisations from whom you may wish to seek information and data. Depending on the processes required this could impact on the timings of the project as approval/consents will be needed prior to data collection.

If you require any advice or support in the use of this toolkit please contact:

Wendy Greenish, Project Manager at Marie Curie Cancer Care

(tel: 0207 599 7278)

Or

Karen Harrison Dening, Consultant Admiral Nurse at Barnet, Enfield and Location Mental Health Trust
Project Protocol

Project title: End of life care for people with advanced dementia in location

Project team

Background

Study Aims and Objectives

The objectives of the project are to:

  • Identify the major barriers for people with dementia and their carers in accessing good quality end of life care
  • Suggest cost effective ways of enabling improvements based on review findings

Study sample

The current project scope is summarised as including:

  • People who have recently died of advanced dementia within a home or institutional environment receiving health services from primary and mental health trusts - and their carers.
  • Health and social care professionals involved in the care of people with advanced dementia

Methods

  • Stakeholder (steering group) meetings

A series of four stakeholder board meetings will be held, at intervals of approximately 2 months including the following stakeholders:

•PCT commissioner

•NHS managers

•Social care manager

•Consultant for Mental Health Services for Older People

•Representative from the Alzheimer’s Society and other voluntary organisations who support people with dementia

•Representative from private care home sector

•Community Matron

•District Nurse manager

•Palliative care consultant

•Specialist palliative care representative

•Expert by experience

Meetings will take place in:

  • Month 3 (to confirm project methodology and identify participants for focus groups and interviews)
  • Month 6 (to receive an interim update on data collection)
  • Month 8 (to review all data and information collected and consider recommendations)
  • Month 10 (to receive and sign off the final report)

Views provided by participants at the stakeholder meetings will inform the content of a topic guide to use in qualitative interviews with carers and health and social care professionals focus groupsand telephone interviews.

We shall use a nominal group method by which participants will be asked to raise and discuss issues of relevance to end of life care service provision in dementia and to rank these issues in order of importance.

  • Audit and case note review

A detailed review will be undertaken of the case notes held in NHS Primary Care servicesor Mental Health Services for Older People of a maximum of 15 patients who have died from dementia in the previous nine months. We shall use purposive sampling to ensure that we include people who are representative of the following groups: those being cared for at home, in care homes, in nursing homes; those from a variety of age ranges, socio-economic and ethnic backgrounds; those for whom no carer was available. We shall record the place of death, place of care and health and social care services received, details of hospital admissions and out patient attendance in the last 6 months of life, thus mapping out the care pathways used by these patients and carers during the last 6 months of life. We shall use a structured audit tool to enter information collected. We shall include economic data on use of services. In cases where patient journeys involve care from other agencies such as social care services we shall seek permission to access notes held by these providers.

  • Carer interviews

The carers of a maximum of 15people who have died from or with dementia known to NHS Primary Care services and/or Mental Health Services for Older People or other health and social services will be approached by letter,with detailed information sheet about the study,no sooner than 4 months and no later than 10 months after the death of the person with dementia,inviting them to take part in qualitative interviews to discuss the care the person received in the last 6 months of their life. We shall use purposive sampling to ensure that we include participants who are representative of the following groups: those that were cared for at home, in care homes, in nursing homes and from a variety of age ranges, socio-economic and ethnic backgrounds.

Carers will be asked to return a reply slip to indicate if they are interested in participating in the study. They will then be contacted by a member of the project team to arrange to meet in a place of their choice, usually the carer’s own home, to discuss the study further and to obtain informed consent.

Consenting carers will then participate in a qualitative interview which will last no more than one hour. A structured topic guide will be used, and detailed field notes will be taken by a member of the project team.

  • Health and social care professionals focus groups

Health and social care professionals, plus staff from private and voluntary organisations identified by members of the stakeholder board will be contacted by letter with a detailed information sheet about the project and invited to attend a focus group in their locality. At the focus group meetings a structured topic guide will be used, and detailed field notes will be taken by a member of the project team. We shall cover social care professionals and health professionals from nursing and medical backgrounds in psychiatry, care of the elderly, specialist palliative and primary care, working across the locality including care home and nursing home staff.

We appreciate that some professionals may have difficulty finding time to attend focus groups, and to ensure that the views of all groups are represented we shall conduct telephone interviews with members of specialties that are under-represented in the focus groups. These interviews will be subject to the same topic guide, and detailed field notes will be taken.

  • Analysis

Detailed field notes will be transcribed and analysed by two members of the project team. Qualitative methods of thematic content analysis (Ritchie and Lewis 2005) will be used to extract themes from pooled field notes from carer and professional interviews, both separately and together. Emergent themes will be explored with attention to content and context of comments noted. These data will be used to describe experiences of care for people with dementia in the last six months of life,the experiences of their carers and the attitudes and views on the mechanisms for and barriers to end of life care provision for this client group.

Audit data will be extracted from the audit tool and descriptive statistics will be used to present data on for example clinical measures (FasT scores), place of care, place of death; presence of a carer; availability of a community psychiatric nurse, Admiral nurse or social worker; acute hospital admissions, length of stay and readmission rates.

Combining qualitative and the audit data, we shall develop examples of patient pathways. We shall use descriptive statistics to describe the costs of use of services for the patients and carers included in the study.

Outcomes

We expect the project to provide the following deliverables:

  • Identification of key issues of importance and concern to patients, carers and services
  • Scoping of existing services in location for this client group
  • Recommendations to enable improved care pathways and outcomes for people with advanced dementia
  • Learning from the project that can be disseminated to others via publication or conference presentations
  • A baseline review of barriers for people with dementia at the end of their lives
  • Recommendations for cost effective service improvements
  • Opportunity to improve the end of life care for a hard to reach client group i.e. people with dementia
  • Data collected may be used to inform the development of new care pathways for this client group

Management of the study

The study team is composed of:

The study team will meet regularly to discuss progress, monitor and if necessary amend the project plan as timeline progresses. The study team will report to Board which will review study progress every 3 months. The stakeholder group will meet every 2 or 3 months. Sponsors will be updated on a quarterly basis.

Ethical considerations

The project is endorsed by

A peer review of this protocol has been carried out by

Timescale

The tables below provide a breakdown of the stages and tasks to be undertaken in the project.

Table 1- Project Plan Timeline

Month / 1 / 2 / 3 / 4 / 5 / 6 / 7 / 8 / 9 / 10
Project team formed / X
Stakeholder board identified / X
Data collection methodology identified / X
Support from stakeholder board re data collection methodology / X
Collection of data / X / X / X / X
Analysis and completion of draft report / X / X
Identification of recommendations / X
Completion of final report / X
References
Alzheimer’s Society (2007) Dementia UK. Alzheimer’s Society Publication

Brayne C, Gao L, Devey M, Mathews FE Dementia before death in ageing societies – the promise of prevention and the reality. PLoS

Department of Health End of Life Care Strategy - promoting high quality care for all adults at the end of life Published:16/07/2008

Department of Health National Dementia Strategy

Knapp M, Prince M. Dementia UK: Report to the Alzheimer's Society, KingsCollegeLondon and LondonSchool of Economics and Political Science: Alzheimer's Society: 2007.

Ritchie J, Lewis J. Qualitative research practice: a guide for social science students and researchers. Sage Publications,2005.

Sampson EL, Blanchard MR, Jones L, Tookman A, King M.Dementia in the acute hospital: prospective cohort study of prevalence and mortality. In Press Dec 2008 British Journal Psychiatry

Xie, J. et al (2008) Survival times in people with dementia: analysis from population based cohort study with 14 year follow-up. British Medical JournalFeb 2:336(7638):258-62

Appendixes

Page
  1. Topic guide for carers/participants
/ 5
  1. Participant information sheet
/ 6
  1. Participant consent form for inclusion in study
/ 10
  1. Interview schedule with carers/participants
/ 11
  1. Topic guide for staff focus groups and case note review
/ 15
  1. Information sheet for staff
/ 16
  1. Staff consent form
/ 18
8. Focus group meetings attendance sheet / 19
9. Request for access to records / 20
10. Data collection form / 22

1. Topic guide for participants/carers

The main aim of the interview is to obtain the following information:

  • Their experience of caring for a dementia patient and their interaction with support services
  • What they would like to see improved in the delivery of care for dementia patients in the terminal stage of their disease.

Topics to be explored:

Illness belief and expectations
  • Illness identity (symptoms)
  • Illness and treatment control
  • Any side effects or consequences
  • Time-line (how long the illness lasted)
Carers/family needs
  • Physical needs
  • Psychological needs
  • Emotional support
  • Social/practical needs
  • Practical support
  • Spiritual/existential needs
  • Spiritual support
  • Barriers on support uptake
Communication
  • Communication re. illness course
  • Understanding of situation
  • Clarity of information given
  • Information needs
/ Decision making
  • Difficulties
  • Influences
  • Living will/awareness of patients wishes
Attitudes towards end of life treatment
  • Important areas of care
  • Influences of previous experiences
  • Confidence in health care professionals
  • End of life treatment preferences
Attitudes towards palliative care principles
  • Thoughts about quality vs. quantity of life
  • Beliefs about benefit of palliative care principles
  • Awareness of palliative care services
Other
  • Anything not mentioned
  • Bereavement support
  • Future hopes

2.Participant information sheet

Organisational logo

Address

Date: As postmark Version no:

Dear

The assessment of end of life care for people with dementia

I would like to invite you to take part in a project that we are currently undertaking to evaluate the support and care provided to persons with dementia who lived in location. Before you decide whether you are willing to take part, it is important for you to understand why this project is being undertaken and what it will involve. Please take time to read the following information carefully. Talk to others about it if you wish; take time to decide whether or not you would like to take part.

Background

Care for people with dementia at the end of their lives may not be as easy to access as it is for other people who, for example, are suffering from cancer. No matter what their age or diagnosis, it should be everyone's right to receive care according to their need. Many people with memory problems who may be entering the last phase of their lives are not always able to access palliative and end of life care. At the moment, available services do not always fully meet the care needs of these people and their carers/relatives. We hope to improve the care for people with dementia by exploring the experiences, views and opinions of relatives and healthcare professionals caring for, and working with, these patients.

We plan to map out the services for patients with advanced dementia in location. We shall do this by holding group discussions with health and social care professionals and individual interviews with carers. An audit and case note review of patients recently deceased will also be carried out.

Why me?

After a discussion with the clinical teams in location, you have been identified as someone who has recently cared for a person with severe memory problems who has passed away. We wish to recruit approximately 10 people who are in this situation. We seek your experience of the support that you and the person you cared for received in the last six months of their life.

Do I have to take part?

No. It is up to you to decide whether or not to take part. If you do, you will be asked to sign a consent form before proceeding further. You are still free to withdraw at any time without giving your reasons.

What will happen if I take part?

We would like to talk to you in a place that is private and convenient for you. We will ask questions about the person you cared for and the care they have received. There are no right or wrong answers to the questions and you can talk about anything that you feel is relevant. It is possible that during the interview you may find the topics discussed sensitive or upsetting. If you do feel like this you must raise it with the interviewer immediately. You are free to ask the interviewer to move on to another subject or to terminate the session altogether. You are not required to discuss anything that you do not want to and only the things which you feel are relevant.

What do I have to do?

An interviewer will contact you and arrange a convenient time to meet you in a place of your choice, usually either your own home or a private room in Hospital. The interview will last approximately one hour. We will ask each carer the same set of questions about care and services the person with dementia received in the last six months of their life. You will have the opportunity to make comments on anything you wish regarding your situation or the support and care received by the person you cared for.