The Palliative Care needs of people with an intellectual disability and dementia
1
Authors: Lasarina Maguire, Stewarts Hospital, Deirdre Shanagher, Irish Hospice Foundation Marie Lynch, Irish Hospice Foundation & Carmel Collins, Irish Hospice Foundation. • The palliative care needs of people with illnesses other than cancer is outlined in government documents dating back to 2001. • The lack of a national dementia strategy and the lack of an end of life care strategy in Ireland have resulted in unclear pathways of care for people with an intellectual disability and dementia. • The Irish Hospice Foundation (IHF) are undertaking a programme of work that is promoting excellence in end of life care for people with dementia. It is as part of this programme that the palliative care needs of people with an intellectual disability and dementia is being explored. The Palliative Care Needs of People with an Intellectual Disability & Dementia: A Literature review Aims Next Steps Introduction/Context Family/Next of kin involvement: • Play a key caring role • Have bereavement needs – often before death • Extra support required upon diagnosis • Extra support required at end of life & with discussions Methods The following key terms were entered on the databases of CINAHL and Pubmed: Palliative care End of life care Intellectual disabilities (I.D) Dementia Initial searches did not yield high amounts of literature. The literature search was widened to data older than ten years and the terms “learning disability” and “Handicapped” were included. Reports, reference lists and recommendations from a person working in the intellectual disability sector were also reviewed for relevance. A total of 65 documents were reviewed in detail. Literture was synthesised and the following themes emerged: “Decision making”, “Family/Next of kin involvement” “Clinical symptoms” & “Knowledge & skills of staff”. Findings To ascertain the current situation with regard to the palliative care needs of people with an intellectual disability and dementia Decision Making: •People with I.D historically excluded from decision making •Communication tools are available to assist with communication •Pending legislation indicates requirement of inclusion in decision making process Clinical Symptoms: •People with I.D have multiple co-morbidities •Receive less screening & Helathcare •End of life care needs are similar to the general population •Pain & symptom management problematic Guidance documents for people with dementia being prepared by the IHF will make specific reference to the palliative care needs of people with an intellectual disability and dementia Resources being prepared for family members with regard to decision making and bereavement will be applicable for family members of those with an intellectual disability and dementia A specific leaflet regarding the palliative care needs of people with an intellectual disability and dementia will be prepared and evaluated by the IHF For further details contact [email protected] or www.hospicefoundation.ie Knowledge & skills of staff: • Staff lack confidence in providing care • Knowledge deficits present • Emotional cost of caring is big – strong relationships developed • Support, guidance and bereavement care required Provide direction for the care and planning of care for people with an intellectual disability and dementia
-
Upload
laura-rooney-ferris -
Category
Healthcare
-
view
30 -
download
1
Transcript of The Palliative Care needs of people with an intellectual disability and dementia
Authors: Lasarina Maguire, Stewarts Hospital, Deirdre Shanagher, Irish Hospice Foundation Marie Lynch, Irish Hospice Foundation & Carmel Collins, Irish Hospice Foundation.
• The palliative care needs of people with illnesses other than cancer is outlined in government documents dating back to 2001.
• The lack of a national dementia strategy and the lack of an end of life care strategy in Ireland have resulted in unclear pathways of care for people with an intellectual disability and dementia.
• The Irish Hospice Foundation (IHF) are undertaking a programme of work that is promoting excellence in end of life care for people with dementia. It is as part of this programme that the palliative care needs of people with an intellectual disability and dementia is being explored.
The Palliative Care Needs of People with an Intellectual
Disability & Dementia: A Literature review
Aims
Next Steps
Introduction/Context
Family/Next of kin
involvement:
• Play a key caring role
• Have bereavement
needs – often before
death
• Extra support required
upon diagnosis
• Extra support required at
end of life & with
discussions
Methods
The following key terms were entered on the databases of CINAHL and Pubmed:
Palliative care
End of life care
Intellectual disabilities (I.D)
Dementia
Initial searches did not yield high amounts of literature.
The literature search was widened to data older than ten years and the terms
“learning disability” and “Handicapped” were included.
Reports, reference lists and recommendations from a person working in the
intellectual disability sector were also reviewed for relevance.
A total of 65 documents were reviewed in detail.
Literture was synthesised and the following themes emerged: “Decision making”,
“Family/Next of kin involvement” “Clinical symptoms” & “Knowledge & skills of staff”.
Findings
To ascertain the
current situation with
regard to the palliative
care needs of people
with an intellectual
disability and dementia
Decision Making:
•People with I.D historically
excluded from decision
making
•Communication tools are
available to assist with
communication
•Pending legislation
indicates requirement of
inclusion in decision
making process
Clinical Symptoms:
•People with I.D have
multiple co-morbidities
•Receive less screening &
Helathcare
•End of life care needs are
similar to the general
population
•Pain & symptom
management problematic
Guidance documents for people with dementia being prepared by the IHF will make specific reference to the palliative
care needs of people with an intellectual disability and dementia
Resources being prepared for family members with regard to decision making and bereavement will be applicable for
family members of those with an intellectual disability and dementia
A specific leaflet regarding the palliative care needs of people with an intellectual disability and dementia will be
prepared and evaluated by the IHF
For further details contact [email protected] or www.hospicefoundation.ie
Knowledge & skills of
staff:
• Staff lack confidence in
providing care
• Knowledge deficits
present
• Emotional cost of caring is
big – strong relationships
developed
• Support, guidance and
bereavement care
required
Provide direction for
the care and planning
of care for people with
an intellectual
disability and dementia
