Younger People with Acquired Brain Injury in Nursing Home - Fact Sheet

The provision of long-term care options for younger people with severe Acquired Brain Injury and high-level care needs has been limited.

Often, younger people with Acquired Brain Injury are placed into aged care facilities where the appropriateness of care is questionable. In the past two decades, there have been extensive public health strategies for injury prevention. Advances in medical technology and trauma care services have resulted in an increasing number of people surviving the acute phase of serious brain injury. These advances have created a new population of individuals with highlevel care needs who require lifelong health, welfare and social support. While life saving procedures following traumatic injury should continue to be given the current high level of priority in our society, there is also a responsibility for society to provide life-long support for the people who survive such trauma. In Australia, the provision of services for rehabilitation and long-term care of people below the age of 65 years with severe Acquired Brain Injury appears to be limited, with few accommodation options for younger people with high levels of care needs. Those who are left with severe and lasting disabilities are often discharged to the care of families or into aged care facilities. Some, though physically fit, are psychologically and socially disabled with unique and individual care needs that are not met by generic or aged care services. Many people with Acquired Brain Injury will remain highly dependent on either their families and/or community services for ongoing care, regular supervision and support. However, families are rarely equipped to meet the challenges of caring for a relative with Acquired Brain Injury. The Kendall report in 1991 estimated that 11,000 people in Queensland would be admitted to hospital each year suffering from some form of brain injury, and only 10% of those people affected by brain injury would receive any type of assistance in the community. The report provided a review of service provision and explored the needs of people with Acquired Brain Injury. From the results, Kendall concluded that in Queensland, people with Acquired Brain Injury had many unmet needs. This data is nearly a decade old and there has been little investigation of the current situation in Queensland.

EXISTING FACILITIES IN QUEENSLAND

There are only two long-term accommodation facilities for young people with Acquired Brain Injury in Queensland: Casuarina Lodge at Wynnum and The Jacana Centre, Bald Hills Hospital. There have been no new long-term accommodation facilities built to cater for younger people with high-level care needs following Acquired Brain Injury. There are few permanent accommodation options for people below the age of 65 years who have high level care needs, and no government funded residential services for people in the 45 to 65 age group. Often, younger people with Acquired Brain Injury who are left with severe and lasting impairments are discharged into aged care facilities for long-term care. In Australia in 1998, there were 5,924 people with a disability under the age of 65 years accommodated in residential aged care facilities. In Queensland, 1,162 people under the age of 65 years were living in aged care facilities.

WHY AGED CARE IS INAPPROPRIATE

There are many reasons why aged care is not suitable for many younger people with an acquired brain injury.

Social environment

There is a lack of peer interaction for younger residents who are in the minority and have nothing in common with other residents. Residents with Acquired Brain Injury frequently seek staff contact in preference to other residents as they are closer in age, interests and can offer more meaningful interaction than some residents who are frail or have dementia. In general, aged care facilities primarily attempt to maintain a serene, quiet atmosphere for aged residents to live their remaining years. Social activities, entertainment, music, exercise and even diet understandably cater for the elderly.

Aged care building design for younger residents

In some facilities there is a lack of privacy and single rooms. Young residents with Acquired Brain Injury may share rooms with people who are elderly and sometimes have dementia. Such living restrictions are likely to create feelings of depression, loneliness, frustration and boredom, thus compounding any existing problems of mood swings, behaviour and impulse control resulting from the brain injury. As many people with Acquired Brain Injury do not have a shortened life span their stay in supported care could be lengthy depending on the age of entry. Younger residents may experience significant loss, through death of many roommates when they reside in aged care facilities for a number of years.

Rehabilitation of younger residents in an aged care setting

Younger residents are usually more physically fit and stronger, requiring a very different level of stimulation and rehabilitation to frail aged residents. On average, younger residents with Acquired Brain Injury require higher numbers of staff hours to meet their nursing and exercise needs than aged residents. Aged care staff are usually not trained in aspects of Acquired Brain Injury. They frequently report problems in communication, managing challenging behaviours and managing the emotional needs or moods of younger people with Acquired Brain Injury. Research has indicated that aged care staff believe that the social, cognitive and rehabilitation aspects of care were of greatest difficulty, and the areas in which the needs of this client group were being least catered for.

Meeting care needs

Aged care staff report the majority of needs as being met. However, there is a markedly different picture with regards to the rehabilitation, emotional, cognitive and social aspects of care. Staff often identify difficulties with providing supervision, communicating with, and managing the emotions and moods of residents with Acquired Brain Injury, and dealing with their challenging behaviours such as disinhibition, verbal or physical aggression.

Adjustment issues for younger residents

For the resident, feelings of loss of independence and control, and post-placement depression are common in adjustment to the new environment and high levels of ongoing support and counselling are often needed. It is often the staff who work in aged care facilities who are faced with providing this complex and ongoing support, with a lack of resources, inadequate levels of training and skills in the area of Acquired Brain Injury, and limited access to specialised rehabilitation and community services.

Family involvement

Often families wish to participate and be involved in all aspects of their relatives' care. Research has indicated limited family participation in the physical aspects of resident care, in contrast with more frequent leisure and social interaction. There are a number of possible reasons for this finding. Families may have chosen to hand the burden of care to professional staff but maintain social and leisure contact. Daily tasks of care are mostly completed in the morning and evening, at the times of day when visitors are not available or not permitted to visit. Some families were reported to have limited contact as a result of their own emotional distress. Sometimes young children and teenagers can be distressed by the aged care environment. It is also possible that aged care facilities do not encourage family participation in the physical aspects of client care, viewing this as predominantly the professional caregiver's role.

PREFERRED ALTERNATIVES OF CARE

Hostel accommodation is designed for people who have significant care needs but are unable to live at home. Another option is group homes or small residential facilities designed for groups of up to five young people with high-level nursing needs. Such facilities are envisaged to provide care for people with significant cognitive impairment and associated physical disabilities. An individualised package is an option that would enable people to remain living at home or in their own places in the community, based on providing funding tailored to the needs of individuals. Finally specialist facilities can be designed for people with Acquired Brain Injury who have specific behavioural difficulties to provide specialist support programs.

CONCLUSION

The current use of aged-care facilities for housing younger people with high level care needs resulting from Acquired Brain Injury is inappropriate and inadequate to meet the specific and complex needs of this group. There is a need for redress in government policy and service planning provision for people below the age of 65 years with Acquired Brain Injury requiring long-term high level care. Further research is needed on the views and experiences of younger people with Acquired Brain Injury residing in aged care facilities and the views and experiences of their families.