Development of a hospice based education programme for health care professionals focusing on end-of-life care for people with dementia Kay de Vries Allyson Clarke Supported by Barclays Capital Grant

Background Background Case note audit Case note audit Education programme outline Education programme outline Methods of delivery Methods of delivery Evaluation Evaluation Conclusion Conclusion

Background Less than 2% of people with dementia in the UK are in hospice care (McCarthy et al, 1997) Less than 2% of people with dementia in the UK are in hospice care (McCarthy et al, 1997) Unknown since that time if there has been an improvement in access to hospice services for people with dementia in UK Unknown since that time if there has been an improvement in access to hospice services for people with dementia in UK USA referral rate to hospice (specifically for their dementia) 11% (Mitchell et al. 2007) USA referral rate to hospice (specifically for their dementia) 11% (Mitchell et al. 2007)

Inadequately managed symptoms Inadequately managed symptoms Lack of support for carers Lack of support for carers Recognising dementia as a terminal illness Recognising dementia as a terminal illness Lack of knowledge and understanding of care needs of people with dementia at the end-of-life Lack of knowledge and understanding of care needs of people with dementia at the end-of-life

Case note audit During the 3 month period of July 2007 and September 2007, 288 hospice charts were audited During the 3 month period of July 2007 and September 2007, 288 hospice charts were audited Aim to better understand how referrals received at a hospice for people with dementia were processed/documented Aim to better understand how referrals received at a hospice for people with dementia were processed/documented To assist in identifying if the needs of this group are being met To assist in identifying if the needs of this group are being met

27 (9%) patients were found to have dementia 27 (9%) patients were found to have dementia Much higher than the UK statistic of less than 2% Much higher than the UK statistic of less than 2% Signifies need for more up-to-date national statistics for number of referrals Signifies need for more up-to-date national statistics for number of referrals

Funded project to set up education programme for hospice staff

Programme content (1 day – repeated several times) Dementia pathophysiology Dementia pathophysiology Assessment and management of symptoms Assessment and management of symptoms Communicating with people with dementia Communicating with people with dementia Managing difficult behaviours Managing difficult behaviours Ethics and decision making Ethics and decision making Supporting carers and bereavement Supporting carers and bereavement

Teaching methods Two facilitators Two facilitators Interactive approach Interactive approach Case studies Case studies Video clips Video clips Resource pack (given at end of day) Resource pack (given at end of day)

Participants (34 attendees) Hospice Ward based Registered General Nurses Hospice Ward based Registered General Nurses Nursing Assistants Nursing Assistants Community Clinical Nurse Specialists Community Clinical Nurse Specialists Clinical Managers Clinical Managers Social Workers Social Workers Bereavement Counselors Bereavement Counselors Medical Consultants Medical Consultants Specialist Registrars Specialist Registrars

Evaluation for ‘Retained’ or ‘deep learning’

Evaluation methods Knowledge and Attitude Questionnaire – administered at the beginning of the study day Knowledge and Attitude Questionnaire – administered at the beginning of the study day General evaluation of study day (same day) General evaluation of study day (same day) Knowledge and Attitude Questionnaire – repeated two months post attendance (20 responses) Knowledge and Attitude Questionnaire – repeated two months post attendance (20 responses)

Audio-taped focus group and individual interviews – conducted two months post attendance (10 participants) Audio-taped focus group and individual interviews – conducted two months post attendance (10 participants)

Results

Pre and post questionnaire Pre and post questionnaireKnowledge - increased significantly in all areas Attitudes - increase to more positive – however attitudes were generally positive in pre-questionnaire - except question relating to ability of the person with dementia to participate in decision making Confidence - significant increase ‘expressed’ - except in relation to challenging behaviour

Focus groups and interviews

Knowledge and awareness of: Pathology of different dementia syndromes Pathology of different dementia syndromes Symptoms of progressive disease Symptoms of progressive disease Dementia as a terminal illness Dementia as a terminal illness Complexity of how dementia can impact on behaviour Complexity of how dementia can impact on behaviour People with dementia still have emotional response to experiences People with dementia still have emotional response to experiences

Recognising the importance of: Finding different ways to communicate Finding different ways to communicate Not relocating the person with dementia Not relocating the person with dementia Early diagnosis and making plans for the future Early diagnosis and making plans for the future Listening to carers Listening to carers Having as much background/history of the person with dementia as possible Having as much background/history of the person with dementia as possible

Impact of programme: Gained confidence Gained confidence Reflected on past experiences and recognised prior lack of confidence and knowledge Reflected on past experiences and recognised prior lack of confidence and knowledge Gaining information that can be used to inform carers Gaining information that can be used to inform carers Gaining information to use for future teaching Gaining information to use for future teaching Acquiring resource materials Acquiring resource materials

Emotional responses: Application of learning to personal life (significant factor) Application of learning to personal life (significant factor) “Videos very memorable/will stay with me” “Videos very memorable/will stay with me” Realisation that the people with dementia have been treated as second class persons in health provision Realisation that the people with dementia have been treated as second class persons in health provision Realising need to know more Realising need to know more

Conclusion Retained learning was achieved Retained learning was achieved Knowledge and confidence increased significantly Knowledge and confidence increased significantly Positive attitudes – may reflect the group (palliative care specialists) Positive attitudes – may reflect the group (palliative care specialists)

Challenging behaviour – requires specialist study programme to concentrate on communication and prevention of distress Challenging behaviour – requires specialist study programme to concentrate on communication and prevention of distress Ability of person to participate in decision making – attitude issue? Ability of person to participate in decision making – attitude issue? Too much material for one day Too much material for one day