The document discusses advance care planning (ACP) for people with dementia living in long-term care settings. It summarizes a study that examined the understanding and experiences of family caregivers, general practitioners, and nursing home staff regarding ACP for dementia patients. The study found poor knowledge of ACP across all groups, especially around legal aspects. Challenges to implementing ACP included concerns about dementia patients' ability to engage and lack of disease-specific guidance. The roles of families, doctors, and nurses in ACP were unclear. The document calls for more research engaging with dementia patients early on to establish their priorities and examine barriers to ACP.

1. ulster.ac.uk
‘The Absent Voice’ - The Reality of Advance Care
Planning for People with Dementia in Long Term Care
Settings.
Esther Beck; Sonja McIlfatrick &Felicity Hasson

2. INTRODUCTION
• International recognition that dementia is a condition that merits a palliative
approach to care (van der Steen et al. 2014).
• Central to the palliative ethos is the acknowledgement of the benefits of
planning ahead (Candy et al. 2015).
• International policy advocates enhanced autonomy in relation to future health
care for all (Patient Self-Determination Act 1991 [US], Mental Capacity Act
2005 [UK], Medical Treatment (Health Directions) Act 2006 [Australia],
Assisted Decision-Making (Capacity) Bill 2013 [Ireland]), with increased onus
on those living with a chronic illness that may affect their future capacity
(Dempsey 2015)..

3. BACKGROUND
• Increased focus on the potential benefits of ACP for people with dementia
(Beck et al. 2017; Brazil et al. 2016), yet discussions are rare (Denning et al.
2017)
• Discussions often commenced on admission to the long term care setting
(Froggatt et al. 2015).
• Research reflects that this is too late to initiate the process of ACP, with this
often resulting in a reactive as opposed to proactive approach to decision
making (Beck et al. 2017).

4. • This results in people with dementia often being outside the process, with this
at odds with the true purpose of ACP, to have the person at the centre of the
decision making process (Glissen et al. 2017).
• The role of health care professionals & family become pivotal (Froggatt et al.
2016), therefore further understanding of their perspective is needed.

5. Aims
• To examine the understanding and experience of family caregivers of people
with dementia, general practitioners and registered nursing home staff,
regarding the process of advance care planning for people with dementia.
• To examine the unique contextual and disease specific challenges when
promoting and implementing advance care planning with people living with
dementia in long term care settings

6. Key Findings
• A total of 165 health care professionals and 16 families participated.
• Poor knowledge of the process of advance care planning was evident across all
three groups, particularly the legal aspects.
• All 3 groups acknowledged the potential benefits of ACP for people with dementia.
• Challenges to implementation in this setting included: concerns regarding the ability
of the person with dementia to engage, the increased role of the family, a lack of
context specific guidance, and a knowledge deficit regarding dementia and advance
care planning.

7. • There was a lack of consensus on timing, roles and content of ACP
discussions.
• GPs played a key role whilst nursing staff remained on the periphery.
• Whilst families were central in the decision making process, their ability was
influenced by a limited awareness of dementia, decisional burden due to guilt
and anticipatory grief, and a limited ability to reflect the wishes of the person
with dementia.

8. The Future
Research priorities
• Engaging with people living with dementia in the early stages of the trajectory,
to establish what is important to them in terms of future health care needs -
the stepping stone for the development of future research priorities
• We need to do research with people with dementia….support and engage in
empowerment…Dementia NI .
• Examine the barriers presently faced by people living with dementia when
engaging in ACP, and explore the facilitators to overcome these. This needs
to have people living with dementia at the core in order to develop future
interventions and shape future health care policy.

9. • To develop a public health approach to highlighting the benefits of planning
ahead. A societal approach to future educational initiatives needs be reflective
of the need to help people not only to live well with dementia, but also the
need to enable them to die well with dementia. This needs to be underpinned
by the recognition of dementia as a condition that merits a palliative approach
to care, from point of diagnosis.

10. DISPELLING THE MYTHS
Conceptions of Palliative Care
Death… the end I
suppose…
Moving out of
my home into
one of those
places…
Pain… I think
it might be
painful … at
the end..
I already have
my funeral
planned…

11. THE FUTURE
I want to feel
secure.. That’s
what really
matters…..
Knowing I will
be safe
Family and
friends… that’s
what is important…
they make me feel
secure
They need to
really know me… I
mean really me…
my holy water.. I
mean just
understanding
what is means to
me…
To still be
treated as me…
not a person
with dementia..
Just me.. that’s
what I hope for.

12. • Central to good dementia care is respect for autonomy through enhanced
empowerment
• People living with dementia are robbed of so much…. Their past, present and
now their future ..
• People living with dementia have a future…. So lets ensure they remain part
of it by enabling them to plan ahead….
Lets give them their voice back…..

13. https://youtu.be/VErAtTG8By4

14. THANK YOU FOR LISTENING