Developing Palliative Care in Dementia Developing Palliative Care in Dementia Services Services An Irish Action Research Study An Irish Action Research Study
Research Project Goal Research Project Goal Devise, implement and evaluate Devise, implement and evaluate appropriate palliative care responses appropriate palliative care responses for people with dementia within an for people with dementia within an Irish health care context. Irish health care context.
Palliative Care Structure Palliative Care Structure Three ascending levels of specialisation: Three ascending levels of specialisation: Level 1 – – Palliative Care Approach Palliative Care Approach Level 1 � Informed by the principles of palliative care, aims to promote Informed by the principles of palliative care, aims to promote � both physical and psychosocial well- -being. being. both physical and psychosocial well � A vital and integral part of all clinical practice, in hospitals A vital and integral part of all clinical practice, in hospitals or the or the � community, whatever the illness or its stage community, whatever the illness or its stage Level 2 – – General Palliative Care General Palliative Care Level 2 � Intermediate level practised by health care professionals with Intermediate level practised by health care professionals with � additional training and experience in palliative care . additional training and experience in palliative care . Level 3 – – Specialist Palliative Care (SPC) Specialist Palliative Care (SPC) Level 3 � Core activity is palliative care by an inter Core activity is palliative care by an inter- -disciplinary team under disciplinary team under � the direction of a consultant in palliative medicine. Available in in the direction of a consultant in palliative medicine. Available primary care, acute general hospitals and hospices (NACPC) primary care, acute general hospitals and hospices (NACPC) (Levels 1 & 2 are referred to as non- -specialist palliative care) specialist palliative care) (Levels 1 & 2 are referred to as non (Palliative Care for All 2008)
Rationale for Palliative Care for Rationale for Palliative Care for People with Dementia People with Dementia � 38,000 people in Ireland have diagnosis of dementia 38,000 people in Ireland have diagnosis of dementia – – � expected to rise to 70,000 by 2026 (O’ ’ Shea 2006). Shea 2006). expected to rise to 70,000 by 2026 (O � People with dementia and families may face complex People with dementia and families may face complex � decisions on care needs, ethical considerations and decisions on care needs, ethical considerations and advance planning advance planning � Co Co- -morbidities morbidities – – cardiac/respiratory, infections etc may cardiac/respiratory, infections etc may � require palliative intervention. require palliative intervention. � Final phase is challenging and difficult to identify. Final phase is challenging and difficult to identify. � � Poor pain control and inappropriate treatment at end Poor pain control and inappropriate treatment at end � stage where no palliative intervention. stage where no palliative intervention.
Non- -specialist palliative care has specialist palliative care has Non specific role in.. specific role in.. � Symptom Management Symptom Management � � Personal Care Personal Care – – dignity/privacy issues dignity/privacy issues � � Physical Care Physical Care - - Nutrition Nutrition � � Psychological Care Psychological Care � � Bereavement Care Bereavement Care � � End of Life Care End of Life Care � � Prompt access to SPC as required Prompt access to SPC as required �
TIMING OF PALLIATIVE CARE in TIMING OF PALLIATIVE CARE in DEMENTIA TRAJECTORY DEMENTIA TRAJECTORY Large oval indicates timing for non- -specialist palliative care specialist palliative care Large oval indicates timing for non Shaded ovals indicate potential timing for SPC Shaded ovals indicate potential timing for SPC Palliative Care for All 2008 IHF & HSE
Consultation Process… … Consultation Process Consensus… ….. .. Consensus � Recognition of need Recognition of need � � Symptom burden Symptom burden � � Need for comprehensive MDT Need for comprehensive MDT � dementia services dementia services � Implementation Implementation � plan plan
3 Action Research Projects – – 3 Action Research Projects Establishing Palliative Care within Establishing Palliative Care within Disease Management Frameworks Disease Management Frameworks � Dementia Dementia � � Heart Failure Heart Failure � � Advanced Respiratory Disease Advanced Respiratory Disease � � Each project will be two year duration Each project will be two year duration � � Part time project officer appointed to each Part time project officer appointed to each � project. project.
Integrating Palliative Care in Integrating Palliative Care in Dementia Services Dementia Services Based on the findings Based on the findings of 2007/08 Study on of 2007/08 Study on Extending Access to Extending Access to Palliative Care Palliative Care
Partnership Approach Partnership Approach Palliative care and dementia Palliative care and dementia Action Research Project co- -funded by funded by Action Research Project co Irish Hospice Foundation, Irish Hospice Foundation, Alzheimer Society of Ireland and Alzheimer Society of Ireland and Baxter International Foundation Baxter International Foundation with full support of HSE and DoHC with full support of HSE and DoHC
Co. Clare Co. Clare
Management Team Management Team � Dr. Tom Reynolds Dr. Tom Reynolds � Consultant Psychiatrist (Older People) Consultant Psychiatrist (Older People) MB BCh MMedSci ( NUI NUI ) MD ( ) MD ( LOND LOND ) ) MB BCh MMedSci ( � Michele Hardiman Michele Hardiman � Assistant Director of Nursing Assistant Director of Nursing RPN, RGN, HDip, MA (Health Management) RPN, RGN, HDip, MA (Health Management) � Marissa Butler Marissa Butler � RPN, RGN, BSc, HDip, RPN, RGN, BSc, HDip, MSc (Dementia- -Mental Health) Mental Health) MSc (Dementia
Misconceptions Misconceptions Clare People – – 23.03.2010 23.03.2010 Clare People
Three Sites Three Sites � Cappahard Lodge Cappahard Lodge � � Carrigoran Nursing Home Carrigoran Nursing Home � � St. Josephs St. Josephs �
Method of Working Method of Working � Action Research Action Research � � Previous Experience Previous Experience – – Emancipatory PD Emancipatory PD � � Using Practice Development tools Using Practice Development tools � � Working with a key MDT in each site Working with a key MDT in each site � McCormack, B. and McCance 2010. Approaches in Person- -Centred Nursing. Centred Nursing. McCormack, B. and McCance 2010. Approaches in Person London:Blackwell. London:Blackwell.
Palliative Care is Person- -Centred Care Centred Care (Hughes, J. 2005) Palliative Care is Person (Hughes, J. 2005) Psychological Needs WHO definition of Aspects of PC (Kitwood) Palliative Care Approach (Addington Hall) Attachment Support to Person and Importance of sensitive Family communication Comfort Symptom Control Quality of Life Identity Integration of Whole Person psychological, social + Approach spiritual aspects Occupation Affirmation of Life Respect for Autonomy Inclusion Support to Person & Care of Person & Family Family
Goals Goals � To find out what people know now To find out what people know now � � Literature Review Literature Review � � Feedback to internal facilitators results from Feedback to internal facilitators results from � questionnaires questionnaires � Prioritise learning needs and palliative Prioritise learning needs and palliative � interventions in a collaborative way interventions in a collaborative way
Data Data � Approaches to Dementia Questionnaire (Lintern Approaches to Dementia Questionnaire (Lintern � and Woods 1996) and Woods 1996) � Palliative Care Questionnaire (McDonnell et al Palliative Care Questionnaire (McDonnell et al � 2008) 2008) � Staff learning needs assessment tool ( Staff learning needs assessment tool (McCarron McCarron � & McCallion 2005) & McCallion 2005) Questionaires administered to Nurses, Questionaires administered to Nurses, Healthcare Assistants and GP’ ’s s Healthcare Assistants and GP
Questionnaires Questionnaires � N=195 (Nurses and HCA N=195 (Nurses and HCA’ ’s) s) � � 119 Nursing Q 119 Nursing Q’ ’s and 76 HCA s and 76 HCA’ ’s Q s Q’ ’s s � � Returned=117 Returned=117 60% of overall figure 60% of overall figure � � 80 80- -Nurses Nurses 67% 67% � � 37 37- -HCA HCA’ ’s s 49% 49% � � N=5 (GP N=5 (GP’ ’s) s) � � Returned=4 Returned=4 80% 80% �
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