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

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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

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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

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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

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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

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Mild dementia Moderate dementia Severe dementia

Aware Not aware

28% of family carers not aware next-of-kin had dementia at death

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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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