supporting people with dementia to die at home 18.2.2016
TRANSCRIPT
Sarah Cronin Dementia Development Officer
Marie Lynch Head of Healthcare ProgrammesDeirdre Shanagher, Development Officer
Supporting people with
dementia to die at home in
Ireland2nd Annual SPHeRE Network Conference, 29th February, 2016
Supporting people with dementia to die at home
1.Facilitators and barriers which support people to die at home
2.What we have learned from the IHF Nurses for Nightcare Service
Death and dying in Ireland 30,000 people die every year
“ 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)
Factors which can enable a person 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
Where do people with dementia die?
• 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)
• 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)
Sleeman et al (2014)
People with dementia accessing NNC Service
Audit on Dementia ReferralsSupplementary information gathered on 52 referrals of people with a diagnosis of dementia who were referred to the NNC service:
• 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??
Profile of people with dementia dying at home
• 74% of sample were female• Age range between 60-103 with the average age being 81.3• 41% lived in an urban setting, 44% in a rural setting and 15% in a
townland• Majority of the sample (73%) lived in their own home with almost
quarter of the sample living in a family carer’s home (23%)• Many family members living in close proximity to the person with
dementia, allowing them to stay between their own home and the home of the person with dementia
• 28% of the sample had no other co-morbidities. • Majority of families providing 24hr care to the person (76%)• In over 50% of cases, the decision to support the person to die at
home was made between the person with dementia and their family.
Formal Supports
Care provided to the person at home
Conclusions“ 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)
•Availability of family /friends to care appears to be a key determinant for people with dementia to remain at home
•Decision to die at home was made by the person with dementia with their families in over 50% of the sample
•GPs and PHNs play a vital role in supporting the person and their family at home
•Majority of sample referred to SPCT in their last week(s) of life for symptom control
•Access to formal supports and care packages varied
Recommendations
• Need for increased awareness of the need for a palliative care approach from point of diagnosis
• Access to palliative care and support for people with dementia
• Support to avoid emergency admissions and ensuring timely discharge for those wishing to die at home
• Continuity of care and collaboration between professionals• Use of nationally recognised tools to identify people who
are in their last weeks/ months of life and to plan ahead and need for care pathways to be developed.
• Carer support – information, practical, financial and psychological
“ 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)
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.