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PICK Project

Promoting informed decision making and effective communication through advance care planning for people living with dementia and their family carers

The patient’s right to self-determination has become a key ethical principle in dementia care. Advance Care Planning (ACP) is in line with the principle of self-determination where an ACP document is a written or verbal record of a person’s choices about their future medical care. Regrettably, given the relative importance of ACP for people living with dementia, the available research demonstrates that the provision of ACP for persons living with dementia is poor.

In Western countries a substantial number of individuals living with dementia are admitted to a Nursing Home before death and are often transferred to hospitals were aggressive and overly burdensome treatments are provided. In this situation family carers are often required to make many difficult and emotionally burdensome decisions about whether or not to proceed with life sustaining treatments which may lead to death when they are not prepared to make such decisions.

The purpose of this study is to evaluate the application of a best-practice ACP model for individuals living with dementia in a sample of nursing homes in Northern Ireland.  Twelve nursing homes will be randomly assigned to ACP with usual care to usual care alone.  Specific outcomes examined will include family carer satisfaction in decision making regarding options for care;  family carer’s overall satisfaction with nursing home care; assessment of comfort care in nursing homes for persons living with dementia; and, impact the ACP model has on the use of acute care services.  As part of this study, the lived experience of family carers required to make treatment decisions on behalf of a family member living with dementia will be explored.

It is anticipated that this study will provide evidence towards the development of practice in nursing home that will support family carers in decisions that will promote person-centred care for individuals living with dementia.

A key component of this study, which many carers found helpful, was the Comfort Care Booklet.  If you are interested in reading this booklet a copy can be found here.

General Practitioners’ Perceptions on Palliative Care for Individuals with Alzheimer’s Disease and Other Progressive Dementias

Neurodegenerative disease mortality is projected to increase by 119% - 231% between 1990 and 2040, with the greatest proportion of this increase being attributed to dementia.  However, despite the increasing numbers of dementia diagnosis and the poor prognosis of persons living with dementia, it is not always recognised as a terminal disease leading to inappropriate palliation and difficult decision-making for family members. 

The provision of palliative care for end-stage dementia presents unique challenges. Specifically, the inability to hold meaningful communication with the patient in the terminal and most significant stages of the disease is exceptionally difficult.  Consequently, due to the absence of constructive decision-making processes family members have to make uninformed decisions on behalf of the individual with dementia.  Therefore, if Advanced Care Planning (ACP) is established, such family members would be in a position to make well-informed decisions regarding their loved one’s preference of future care.  Consequently, good communication is at the heart of good dementia care, however, the completion of ACP in the primary care setting by patients with dementia is low. 

The purpose of the study is to report attitudes and practice preferences of general practitioners (GPs) regarding communication, and decision-making for patients with dementia and their families. This will be addressed by carrying out a cross-sectional postal survey of GPs located across Northern Ireland with responsibility for patients with dementia. The ‘Care for Dementia Patients at the End of Life’ survey to be used explores GPs’ perceptions on palliative care for individuals living with dementia, with a focus on communication, decision-making and advance care planning.  It is anticipated that this will help to identify barriers to the provision of palliative care in dementia and potential solutions.