Post on 16-Apr-2017
Old age, dementia and end of life care
Thesis presentation
Yolanda W.H. Penders
An ageing society
2012
<65 65+
2050
<65 65+
Overmedication
Educating healthcare providers
Healthcare challenges for older people at the end of life
Communication
Palliative care
Costs of care
Long-term care settings
Dementia care
Loneliness
Burden of informal
care
Chronic illness management
Resource use
Healthcare challenges for older people at the end of life
Communication
Palliative care
Costs of care
Long-term care settings
Dementia care
Methods
• GP Sentinel networks
– Retrospective survey via network of general practitioners about deceased patients
• Study of Health, Ageing and Retirement in Europe
– Retrospective survey by next of kin about deceased study participants
• Dying Well with Dementia
– Retrospective surveys by GP, nursing home staff and next of kin about deceased nursing home residents
Long-term care settings
What are the circumstances of end-of-life care for older people in the home setting and in
residential homes in the Netherlands?
Long-term elderly care in Belgium and the Netherlands
Belgium:
• Care homes (woonzorgcentra)
– Community GPs
– In-house coordinating advising physician
Netherlands:
• Residential homes (verzorgingshuis)
– Community GPs
• Nursing homes (verpleeghuis)
– In-house specialist geriatric care
Equally likely to receive palliative care, but residential home residents more often from GP with formal training
0
10
20
30
40
50
60
70
80
90
100
Palliative care by GP Palliative care by GP withformal training
Specialized palliative care
Home Residential home
Older people living at home are more often transferred in last 3 months of life
0
10
20
30
40
50
60
70
80
90
100
No transitions 1 transition 2 or moretransitions
Died in hospital
Home Residential home
Palliative care
Are there trends in the frequency of use of palliative care services by older people in
Belgium between 2005 and 2014?
Palliative care
“Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
- WHO
Specialized palliative care in Belgium
Home:
• Multidisciplinary palliative homecare team (1997, 2001)
Hospital:
• Palliative care unit with 6-12 beds (1997)
• Mobile palliative care support team (1997)
Care homes:
• Reference person for palliative care for 0.10 FTE per 30 residents (2009)
Palliative care in care homes is up, in hospital stagnates
0
10
20
30
40
50
60
70
80
90
100
2005 2006 2007 2008 2009 2010 2011 2012 2013 2014
Home Hospital Care home Total
Palliative care = terminal care?
Palliative care = terminal care?
Late initiation also seen in the
Netherlands for older people living
at home and in residential homes!
Communication
Are there trends in the rate of occurrence of advance care planning for older people in
Belgium and the Netherlands between 2009 and 2014?
Advance care planning
Advance care planning is a process of communication by which a person may make their wishes and goals for future care known to their healthcare providers, informal carers and next-of-kin, anticipating future health issues and potential loss of decision-making capacity.
However, differences between patient groups increased
In Belgium, non-cancer patients, the oldest old and people with dementia showed smaller
increases in % GP aware
==
Increasing inequality?
What about people with dementia?
Care for people with dementia is largely the same as for older people in general, except
COMMUNICATION
Communication with people with dementia in Belgium is low
0
10
20
30
40
50
60
70
80
90
100
Preferenceproxy decision-
maker
Preferenceplace of death
Preferencemedical
treatment
Primarydiagnosis
Physicalsymptoms
Psychologicalsymptoms
Options forpalliative care
Mild dementia Severe dementia
Sudden and non-sudden deaths
Communication
To what extent are family carers aware that their deceased next of kin living in a nursing home
had dementia in Belgium?
28% of family carers not aware next-of-kin had dementia at death
0
10
20
30
40
50
60
70
80
90
100
Mild dementia Moderate dementia Severe dementia
Aware Not aware
28% of family carers not aware next-of-kin had dementia at death
0
10
20
30
40
50
60
70
80
90
100
Milddementia
Moderatedementia
Severedementia
Aware Not aware
Awareness less likely - the longer the
admission - the longer after
admission dementia occurred
Costs of care
What are the out-of-pocket costs associated with care in the last year of life of older people
in thirteen European countries, and which patient and care characteristics are associated
with these costs?
Large variation across Europe
• % of people with out-of-pocket costs varied between 96% (Sweden) and 21% (Spain)
• Out-of-pocket costs as a % of median household income varied between 2% (the Netherlands) and 25% (the Czech Republic)
BUT:
Care homes were most expensive type of care in 11/13 countries
Summary
• Older people at home are more likely to be transferred at the end of life
• Palliative care in care homes is increasing, but in other settings is stagnating
• Communication between patients, GPs and family is insufficient
• Care in care homes is one of the most costly types of care in terms of out-of-pocket costs
Recommendations
1. Investing in formal and informal home care
More older people living at home = more hospitalisations, more need for palliative care at home and more burden on informal carers
Recommendations
2. More and earlier communication, especially with people with dementia
Inevitable cognitive decline means early communication is important. Stigma and lack of curative options should not be a barrier to open communication.
Recommendations
3. Earlier involvement of palliative care(?)
Older people and people with dementia may suffer years of slow decline. From which point on and in which situations is palliative care beneficial?
Old age, dementia and end of life care
Thesis presentation
Yolanda W.H. Penders
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