Development of a hospice Development of a hospice based education programme based education programme for health care professionals for health care professionals focusing on end-of-life care focusing on end-of-life care for people with dementiafor people with dementia

Kay de VriesKay de Vries

Allyson ClarkeAllyson Clarke Supported Supported by Barclays by Barclays

Capital Capital GrantGrant

•BackgroundBackground

•Case note audit Case note audit

•Education programme outlineEducation programme outline

•Methods of deliveryMethods of delivery

•EvaluationEvaluation

•Conclusion Conclusion

BackgroundBackground

• Less than 2% of people with dementia in Less than 2% of people with dementia in the UK are in hospice care (McCarthy et al, the UK are in hospice care (McCarthy et al, 1997)1997)

• Unknown since that time if there has been Unknown since that time if there has been an improvement in access to hospice an improvement in access to hospice services for people with dementia in UKservices for people with dementia in UK

• USA referral rate to hospice (specifically for USA referral rate to hospice (specifically for their dementia) 11% (Mitchell et al. 2007)their dementia) 11% (Mitchell et al. 2007)

• Inadequately managed symptomsInadequately managed symptoms

• Lack of support for carersLack of support for carers

• Recognising dementia as a terminal Recognising dementia as a terminal illnessillness

• Lack of knowledge and understanding of Lack of knowledge and understanding of care needs of people with dementia at care needs of people with dementia at the end-of-lifethe end-of-life

Case note auditCase note audit

• During the 3 month period of July During the 3 month period of July 2007 and September 2007, 288 2007 and September 2007, 288 hospice charts were auditedhospice charts were audited

• Aim to better understand how Aim to better understand how referrals received at a hospice for referrals received at a hospice for people with dementia were people with dementia were processed/documented processed/documented

• To assist in identifying if the needs of To assist in identifying if the needs of this group are being metthis group are being met

• 27 (9%) patients were found to have 27 (9%) patients were found to have dementiadementia

• Much higher than the UK statistic of Much higher than the UK statistic of less than 2%less than 2%

• Signifies need for more up-to-date Signifies need for more up-to-date national statistics for number of national statistics for number of referralsreferrals

Funded project to set up Funded project to set up education programme for education programme for

hospice staffhospice staff

Programme content (1 day – Programme content (1 day – repeated several times)repeated several times)

• Dementia pathophysiology Dementia pathophysiology

• Assessment and management of Assessment and management of symptoms symptoms

• Communicating with people with Communicating with people with dementia dementia

• Managing difficult behaviours Managing difficult behaviours

• Ethics and decision making Ethics and decision making

• Supporting carers and bereavement Supporting carers and bereavement

Teaching methodsTeaching methods

• Two facilitatorsTwo facilitators

• Interactive approachInteractive approach

• Case studiesCase studies

• Video clipsVideo clips

• Resource pack (given at end of day)Resource pack (given at end of day)

Participants (34 attendees)Participants (34 attendees)

• Hospice Ward Hospice Ward based Registered based Registered General NursesGeneral Nurses

• Nursing AssistantsNursing Assistants

• Community Community Clinical Nurse Clinical Nurse SpecialistsSpecialists

• Clinical ManagersClinical Managers

• Social WorkersSocial Workers

• Bereavement Bereavement CounselorsCounselors

• Medical Medical ConsultantsConsultants

• Specialist Specialist RegistrarsRegistrars

Evaluation forEvaluation for‘Retained’ or ‘deep ‘Retained’ or ‘deep

learning’ learning’

Evaluation methodsEvaluation methods

• Knowledge and Attitude Questionnaire – Knowledge and Attitude Questionnaire – administered at the beginning of the study administered at the beginning of the study dayday

• General evaluation of study day (same day) General evaluation of study day (same day)

• Knowledge and Attitude Questionnaire – Knowledge and Attitude Questionnaire – repeated two months post attendance (20 repeated two months post attendance (20 responses)responses)

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

ResultsResults

Pre and post questionnairePre and post questionnaire

Knowledge Knowledge - increased significantly in all areas- increased significantly in all areas

AttitudesAttitudes- increase to more positive – however attitudes - increase to more positive – however attitudes were generally positive in pre-questionnairewere generally positive in pre-questionnaire- except question relating to ability of the - except question relating to ability of the person with dementia to participate in decision person with dementia to participate in decision makingmaking

Confidence Confidence - significant increase ‘expressed’ - significant increase ‘expressed’ - except in relation to challenging behaviour- except in relation to challenging behaviour

Focus groups and Focus groups and interviewsinterviews

Knowledge and awareness of:Knowledge and awareness of:

• Pathology of different dementia Pathology of different dementia syndromessyndromes

• Symptoms of progressive diseaseSymptoms of progressive disease• Dementia as a terminal illnessDementia as a terminal illness• Complexity of how dementia can Complexity of how dementia can

impact on behaviourimpact on behaviour• People with dementia still have People with dementia still have

emotional response to experiencesemotional response to experiences

Recognising the importance of:Recognising the importance of:

• Finding different ways to communicateFinding different ways to communicate

• Not relocating the person with Not relocating the person with dementia dementia

• Early diagnosis and making plans for Early diagnosis and making plans for the futurethe future

• Listening to carersListening to carers

• Having as much background/history of Having as much background/history of the person with dementia as possiblethe person with dementia as possible

Impact of programme:Impact of programme:

• Gained confidenceGained confidence

• Reflected on past experiences and Reflected on past experiences and recognised prior lack of confidence and recognised prior lack of confidence and knowledge knowledge

• Gaining information that can be used to Gaining information that can be used to inform carers inform carers

• Gaining information to use for future Gaining information to use for future teaching teaching

• Acquiring resource materialsAcquiring resource materials

Emotional responses:Emotional responses:

• Application of learning to personal life Application of learning to personal life (significant factor) (significant factor)

• ““Videos very memorable/will stay with Videos very memorable/will stay with me” me”

• Realisation that the people with Realisation that the people with dementia have been treated as second dementia have been treated as second class persons in health provisionclass persons in health provision

• Realising need to know moreRealising need to know more

Conclusion Conclusion

• Retained learning was achievedRetained learning was achieved

• Knowledge and confidenceKnowledge and confidence increased significantlyincreased significantly

• Positive attitudes Positive attitudes –– may reflect the may reflect the group (palliative care specialists)group (palliative care specialists)

• Challenging behaviourChallenging behaviour – requires – requires specialist study programme to specialist study programme to concentrate on communication and concentrate on communication and prevention of distressprevention of distress

• Ability of person to participate in Ability of person to participate in decision makingdecision making – attitude issue? – attitude issue?

• Too much material for one dayToo much material for one day