Guidelines

Background The Family Carer Decision Support (FCDS) intervention has been designed to inform family carers about end of life care options available to a person living with advanced dementia. The FCDS intervention demonstrated a statistically significant impact in reducing family carer decision uncertainty on establishing goals of care at the end of life and, improved family carer satisfaction on quality of care in a study conducted in the United Kingdom.

Background and Objectives: To avoid "chemical restraints," policies and guidelines have been implemented to curb the use of medications for behavioral and psychological symptoms of dementia (BPSD). Antipsychotics have been particularly targeted because of their rare severe side effects. Consequently, caregiver directed non-pharmacologic therapies have increased while medication use for BPSD has diminished. Despite such initiatives, however, antipsychotics continue to be prescribed "off-label" for roughly 20% of nursing home patients.

This guide and action planning tool aims to assist staff working in the health service to implement carer related elements in various government guidance. This includes 'Caring for carers', 'National framework for mental health', 'National framework for older people', NHS plan 2001 and 'Valuing people'.

There are at least six million unpaid carers in Great Britain and Northern Ireland, and 1.25 million provide at least 50 hours of care a week.1 One in five households contains a carer.2 Sixteen per cent of carers are over 65, and half of those being cared for are 75 or older.3 Many are ‘round the clock’ carers. Carers are the bedrock of the care and support system; the vast majority of care needs are provided by unpaid carers at home.

In Australia, many people ageing in their own homes are becoming increasingly frail and unwell, approaching the end of life. A palliative approach, which adheres to palliative care principles, is often appropriate. These principles provide a framework for proactive and holistic care in which quality of life and of dying is prioritised, as is support for families. A palliative approach can be delivered by the general practitioner working with the community aged care team, in collaboration with family carers. Support from specialist palliative care services is available if necessary.

In 2009, The Social Care Institute for Excellence introduced guidelines for practitioners to support families in which parents have mental health problems. Here, SCIE presents a case study demonstrating how the guidance could be successfully applied. 

As part of its National Strategy for Carers, the Government developed and approved in 2000 a set of fixed quality standards for local services to support carers - family and friends looking after those who are sick, disabled, vulnerable or frail. How Good is Your Service to Carers? is designed to help individuals, local groups and service organisations assess how well they meet these quality standards, which cover: information, providing a break; emotional support; support to care for and maintain the carer's own health; having a voice.