Presentation of findings of an audit carried out on the nurses for night care service over a 6 month period that identifies the components of care that support people with dementia to die at home in Ireland

1. Supporting
People
With
Dementia
to Die at
Home in
Ireland
May 28th 2018

2. Today:
• Where do people with Dementia die?
• What are the factors that support people with dementia to
die at home?
• What would help to enable more people with dementia
die at home?

3. Where and how people
die
CSO Data Q1-3 2017:
1800 Dementia and
Alzheimer's deaths
(approx 7.7%)

4. Where do people with Dementia die?
• Home deaths remain rare for people with dementia across Europe
with rates varying from 3.3% in Wales to 16.4% in Belgium (Houttekier
et al 2010)
• Less than 5% of dementia patients died in home (Public Health England 2014)
• People with dementia are 4 times more likely to die in residential
care (Murtagh et al 2012)
• 2 in 5 people with dementia die in hospital (Sleeman et al 2014)

5. Supporting people with dementia to die at
home
Dementia referrals versus total no of referrals 2017
Total no Referrals 2017 80% (N 668)
Dementia Referrals 2017 20% (N 162)

6. People with dementia accessing NNC Service
0
20
40
60
80
100
120
140
160
180
2012 2013 2014 2015 2016 2017
No of Dementia Referrals

7. What are the factors that support people with dementia
to die at home?
Personal and Demographic Factors
• Carers
• Gender
• Age
• Marital Status
• Level of Education
• Presence of Advance Care Plan
• Socioeconomic Status
Disease-related factors
• Diagnosis
• Co-morbidities
• Symptom management
• Pain
Environmental factors
• Urban vs rural location
• Availability of local services and supports – GP, OOH, SPCT
• Hospital and residential care beds
• Access to equipment
• Formal supports
References at end of presentation

8. Audit on Dementia Referrals
Supplementary information gathered on 52 referrals of people with a
diagnosis of dementia who were referred to the NNC service 2015 July -
Dec:
• Demographics – gender, age, address, living situation, length of time living
with dementia, co-morbidities, presence of an ACP
• Length of time involved with SPCT
• Reason for referral
• Supports – informal and formal
• Care in the home provided by family versus homecare packages/ other formal
supports
What are the key components of care
which enable a person with dementia to
die at home in Ireland?

9. What are the factors that support people
with dementia to die at home?

10. Care provided to the person at home

11. Formal Supports
Formal
supports
available to
the person
GP
Homecare
Packages
OOH
providers
Public
Health
Nurses
HCPs

12. What would help to enable more people with dementia
die at home?
“ Where someone with dementia dies should be
led by their needs, what is known of their wishes
and the needs of the people caring for them”
(Kane, 2012)

13. What would help to enable more people with dementia
die at home?

14. “ While a good death at home may
not be feasible or desirable for
everyone, it could undoubtedly be a
reality for many more people if we
nurture the services to support it”
NHS 2012

15. Other Resources:

16. For more information:
Deirdre Shanagher
Deirdre.shanagher@hospicefoundation.i
e
Thank you & Questions

17. References
• Weafer, J (2014). Irish attitudes to death, dying and bereavement 2004-2014. Dublin: Irish Hospice
Foundation.
• Murtagh, F.E.M, Bausewein, C., Petkova, H, Sleeman, K.E., Dodd, R.H., Gysels, M., Johnston, B., Murray,
S., Banerjee, S., Shipman, C., Hansford, P, Wakefield, D., Gomes, B and Higginson, I.J. (2012).
Understanding place of death for patients with non malignant conditions: a systematic review. NHS:
National Institute for Health Research Service Delivery and Organisation Programme.
• Sleeman, K.E., Ho, Y.K, Verne, J, Gao, W. and Higginson, I.J. on behalf of the GUIDE_Care project (2014).
Reversal of English trend towards hospital death in dementia: a population-based study of place and death
and associated individual and regional factors, 2001-2010. BMC Neurology 14:59.
• Houttekier, D., Cohen, J., Bilsen, J., Addington-Hall, J., Bregie, D., Onwuteaka-Philipsen, Deliens, L.
(2010). Place of Death of Older Persons with Dementia. A Study in Five European Countries. Journal of the
American Geriatrics Society, 58(4):751-6
• NHS National End of Life Care Programme(2012). Critical success factors that enable individuals die in
their preferred place of death. A report based on contributions from End of Life Care commissioners and
providers of services within 7 PCT areas. UK: Department of Health.
• Kane, M (2012). My Life until the end: Dying well with Dementia. Alzheimers Society UK.