Background Dementia is a progressive life-limiting illness. People with dementia value planning ahead. It allows them to express wishes and preferences and reduces anxiety. With the enactment of The Assisted Decision Making (Capacity) Act 2015 guidance in relation to advance care planning and advance healthcare directives with people with dementia is required by health and social care professionals.
Methods An expert advisory group was established. A systematic literature review, searching online databases, CINAHL and PubMed was carried out. Grey literature was also accessed. The themes were presided on by the expert advisory group. Identified literature review themes directed the scope of the guidance.
Results 288 articles were deemed appropriate. Post review with the expert advisory group the scope of the guidance document was extended to reach the person with dementia and family carers as well as healthcare staff across all settings.
The themes from the literature include:
Advance care planning and advance healthcare directives with people with dementia
Advance care planning is difficult to engage in due to fluctuating capacity.
Uncertain about roles in advance care planning and having conversations.
Time constraints, lack of knowledge and understanding of dementia, advance care planning and legal responsibilities are factors.
Guidance is offered on each on each of the above areas.
Conclusion A guidance document has been prepared for health and social care staff to provide palliative care to people with dementia. The document will be published and made available via the Irish Hospice Foundation website.
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