End of Life

Palliative care for people living with dementia is a relatively new concept, having been previously restricted to terminal illnesses, such as cancer.  In NI the End of Life strategy includes dementia as one of the chronic conditions where palliative and end of life care should be viewed as a continuum of care, as a person’s condition progresses.  The limited body of research on approaches to end of life and palliative care for people with dementia reflects the outstanding work needed to marry the fields. This body of literature addresses various aspects of end-of-life care for people with dementia and the articles are based on studies undertaken in diverse care settings: an acute setting, nursing home setting and intellectual disability settings. Three of the eight papers summarised here relate to clinician care, attitudes and decision-making. This is not unsurprising given that many people with dementia will find themselves in an acute setting at the end of their life.  A variety of methodological approaches are taken; questionnaires are the most common approach, while one paper documents a literature review and another examines retrospective case studies. Three papers from a study relating to dementia and intellectual disability are included. 

The Role and Timing of Palliative Care in Supporting Persons with Intellectual Disability and Advanced Dementia (2011)

MCCARRON, M., MCCALLION, P., FAHEY-MCCARTHY, E., CONNAIRE, K.
Journal of Applied Research in Intellectual Disabilities
2011

This paper by McCarron et al. (2011) identifies seven inter-related themes thought to influence the role and timing of palliative care for people with an intellectual disability who have dementia. 

 

Staff perceptions of essential prerequisites underpinning end-of-life care for persons with intellectual disability and advanced dementia

MCCARRON, M., MCCALLION, P., FAHEY-MCCARTHY, E., CONNAIRE, K.
Journal of Policy & Practice in Intellectual Disabilities
2010

This paper by McCarron et al. (2010b) discusses three key themes emerging from focus groups with staff working in ID care settings and a specialist palliative care provider in ROI supporting persons with an intellectual disability and dementia at the end of life.

The three key themes were: readiness to respond to end of life care needs; the fear of swallowing difficulties and environmental concerns, and ageing in place.

Supporting persons with Down syndrome and advanced dementia: challenges and care concerns

MCCARRON, M., MCCALLION, P., FAHEY-MCCARTHY, E., CONNAIRE, K., DUNN-LANE, J.
Dementia
2010

In this paper, McCarron et al.

(2010a) highlight the complexity of providing good end of life care for people with an intellectual disability and dementia and the need for further training and support, suggesting a more collaborative approach between Specialist Palliative Care Services and Intellectual Disability Services.  

Cause of death in Alzheimer's disease: a cohort study

TODD, S., BARR, S., A.P.
QJM: monthly journal of the As
2013

In this prospective study, Todd et al.

(2013) examined the cause of death recorded on death certificates in an cohort of patients with Alzheimer’s disease in NI and compared these findings with expected death rates from the population to determine the accuracy of death certificate completion for a cohort of people with AD. The study found that AD was recorded on almost two-thirds of death certificates of AD subjects who died during follow-up. It found significant excess mortality in the AD group when compared with the NI population and that AD and pneumonia were the most significant underlying causes of death in the AD group. To explain differences between findings in the AD group compared with a control group, the authors conjecture that cause of death documented may be affected by the physician’s knowledge of the patient or reflect the approach to management of patients with end-stage dementia. 

Challenges that specialist palliative care nurses encounter when caring for patients with advanced dementia

BARBER, J., MURPHY, K.
International journal of palliative nursing
2011

In a literature review examining specialist palliative care for people with dementia Barber and Murphy (2011) reported that there is very little information available about end-of-life care in advanced dementia from the viewpoint of the SPC nurse.

The review suggests that expertise in both dementia care and palliative care needs to be combined and that further research is required to establish guidelines to assist with specialist training of staff.

Guidelines for nursing homes delivering end-of-life care to residents with dementia across the island of Ireland

CAHILL, S., DORAN, D., WATSON, M.
Quality in Ageing & Older Adults
2010

Cahill et al.

(2010) found that bereaved spouses of people with dementia who had been living in nursing homes were generally satisfied with the end of life care that their relatives had received and valued good personal care underpinned by a person-centred philosophy, being kept informed of their relatives’ care and having an opportunity to participate in appropriate decision-making at the end of life.     

A cross-national cross-sectional survey of the attitudes and perceived competence of final-year medicine, nursing and pharmacy students in relation to end-of-life care in dementia

DE WITT JANSEN, B., WECKMANN, M., NGUYEN, C.M., PARSONS, C., HUGHES, C.M.
Palliative medicine
2013

De Witt Jansen et al. (2013) compared the attitudes to people with dementia of final year medical, nursing and pharmacy student groups in the US and NI, and also examined perceived levels of confidence and competence in providing end of life care.

They found that students across the three professions in both the US and NI held positive attitudes towards people with dementia but reported different levels of competence in end of life care that was largely linked to differences in disciplinary training   

Assessment of factors that influence physician decision making regarding medication use in patients with dementia at the end of life

PARSONS, C., MCCORRY, N., MURPHY, K., BYRNE, S., O'SULLIVAN, D., O'MAHONY, D., PASSMORE, P., PATTERSON, S., HUGHES, C.
International journal of geriatric psychiatry
2014

Parsons et al.

(2014) assessed the extent to which patient-related factors and physician's country of practice influenced decision making among hospital physicians and GPs regarding withholding or discontinuing key medications in patients with end-stage dementia in NI and in ROI. The study evidences uncertainty and variation around the prescribing of antibiotics and the discontinuation of anti-dementia medication. There was less variability in decision-making related to statins and anti-psychotic drugs. The authors found that for all medications, care setting and physician's country of practice had the strongest and most consistent effects on decision making. 

Quality of end-of-life care for dementia patients during acute hospital admission: a retrospective study in Ireland

AFZAL, N., BUHAGIAR, K., FLOOD, J., COSGRAVE, M.
General hospital psychiatry
2010

In a retrospective case study review, Afzal et.al. (2010) analysed potential differences in quality of end of life care for people with dementia during their final hospital stay compared to people without dementia.

 The study highlights potential inequalities and concludes that people diagnosed with dementia have less access to palliative care, and their caregivers are given less opportunity to take part in decisions about treatment.