Anglicare Report - Care to live or live to care? (2010)

Care to live or live to care? An insight into the experiences of ageing parent carers

ANGLICARE Diocese of Sydney: Sue King, Johnson Nsiah, Caitlin McDowell and John Bellamy, October 2010

This recent report by Anglicare reports on findings over 2 years from 289 participants in the Support Coordination Program for ageing parent carers.  The findings reflect those of numerous previous reports on issues faced by family and carers of persons with a disability, including persons with a mental illness. The ageing of persons with a disability is a relatively new phenomenon.  The ageing process for persons with a disability presents particular difficulties which flow into the need for innovative and specialised policy and service responses. 

Despite some degree of preoccupation with intellectual disability, the findings of this report are relevant to ARAFMI’s members and Mental Health carers more generally, particularly the need for a spectrum of supported accommodation models to allow for the diverse needs of the individual care recipient.  One of most significant gaps identified in the report is the lack of long-term supported accommodation.  Further to this, demand for longer term respite services leads to a shortage of emergency respite to provide care in times of crisis such as when a carer is hospitalised.  There is a need for increased funding for in-home respite care.

Some basic findings:

  • Approximately  82% of ageing parent carers are female.
  • 88% cared for adult son or daughter;  another 5% for a child under 18
  • 96% live with the care recipient – hence there is a 24 hours commitment
  • 89% had been in their caring role more than 10 years; over 33%, more than 40 years.

Emotional aspects of caring

The report notes that little attention is paid to addressing the emotional needs of carers. There are high levels of isolation and limited social support from family and friends.  Compounding this are problems of trust and communication with service providers, which compromises the willingness of carers to engage with services at the same time that it compromises the capacity for service providers to address the needs of their clients.

Issues for ageing parent carers on entry to the Support Coordination Program:

  • Anxiety
  • Depression
  • Stress
  • Social isolation

Key stressors for ageing parent carers:

  1. Future planning
  2. Sources of assistance
  3. Anxiety about future
  4. Need for time out
  5. Conflict and challenging behaviors

Although around 25% of those participating in the program received assistance regarding social contact for the care recipient, the majority of ageing parent carers – 75% - were unable to pursue their own goals and interests.   Carers were overwhelmingly (90%) unable to increase their social contacts or to maintain friendships outside home. There is insufficient access to integrated communication services and, following on from this, social isolation.  This has a significant impact upon the health and well being of carers.

Issues related to service provision and unmet service needs

The report notes that “integrated, targeted and holistic policy solutions are required to establish new pathways for ageing parent carers and the people for whom they care” (p. 2). It finds significant benefits flowing from case management and suggests a need to continue and expand such programs.

What carers they say they need:

  • Personal care and domestic assistance
  • Respite
  • Social support
  • Case management and carer education
  • Transport
  • Transition planning

Service Gaps:

  • Development of transition plan - 4/5 raised this as an issue
  • Assistance for care recipient to pursue goal/interests - 3/4 saw this as a concern
  • Increased social contacts and maintain friendships for the carer – 3/5 saw this as an issue

Service Limitations:

  • Respite
  • Service Confusion
  • Limited hours of operation
  • Limitations for challenging behaviour

Improving services:

  • Information on services carers are already in contact with as well as those which may be accessed if required
  • Future planning - financial, residential, guardianship
  • Development of trust between the ageing carers and service providers
  • Accessing carers before crisis point and engaging in planning ahead of time
  • Case management to link carers into service system
  • Need for an emphasis on working with family in natural setting of their home and building relationships
  • Need for preventative care supports to maintain healthy relationship with the care recipient
  • Need for info to permit decisions about caring role and support of the care recipient
  • Government policy for carers needs to be outcome focused - positive service experiences which build trust
  • Action research and evaluation process to enable family participation in development of innovative service delivery options

Recommendations:

  • Funding for more respite places for both emergency and planned respite
  • Significant increase in supported accommodation places.
  • Innovative blended and integrated services and models of care for carers and care recipient
  • Increased funding for carer education and counseling
  • Intensive marketing of services to ageing parent carers via community, medical and hospital outlets
  • Consolidate information on service access points
  • Ensure public health professionals are aware of simple service access points - General Practitioners, Community nurses, other
  • Increased funding for case management

Closing comments

The report concludes by saying that “ageing parent carers are stoic, determined, exhausted and not adequately supported by the current system.  They exhibit significant levels of stress, isolation and disconnection from social and community support networks…Their well being and health is frequently compromised yet they maintain their caring role in the face of often insurmountable barriers.  They are both caring and careworn” (p.24).

There is already a large evidence base highlighting the plight of carers and care recipients.  Numerous reports have discussed the same or similar issues and the findings of these reports are remarkably consistent.  As the report questions: “Can the evidence provided in this and other reports move government to transform policy and make a difference in the lives of such carers – people who are taking on the responsibility, the financial cost and the advocacy of caring in the community?” (p. 24).  This is the task at hand for elected representatives and policy-makers at both federal and state levels.

The full text of the Anglicare report may be accessed at: www.anglicare.org.au/news-research-events/latest-research/care-to-live-or-live-to-care

Comments

My entire adult life until now was spent being an involuntary carer for my parents. Childhood abuse and neglect forced me to leave home age 17. I became independent and self sufficient. At various points in my adult life my parents interfered in my personal relationships. They were never responsible for themselves and used every family member. They started dumping their problems on me after my divorce when I was vulnerable. I brought my daughter up alone and worked to put food on the table. My parents gambling, debts and dysfunctional lives worsened after they sold their home. They moved to Queensland and went through 80,000 dollars in one year. Broke and desperate they asked me to find them a flat here, which I did. It was a mistake. My father, a distant, narcissistic, controlling man kept working to gamble. My mother, a depressive who never took responsibility for her life became more clinging. I never recieved any support from them. Too mean to put the phone on, but able to feed slot machines every week. Last week with my health failing I said enough. They have what they need to live and each other. They no longer have the right to use me as a convenient taxi, counsellor, problem fixer etc. I have been socially isolated because of their demands over the last four years. I had to pull away or end up going down the sewer with them. Parents can cause so much damage. When they abuse you then condition you so you have no self esteem left they have a compliant dummy to manipulate. I was that dummy until I realised I do not owe them anything. I did not ask to be born and wish I had never been born to these two who should have never been parents. They were irresponsible before children, nothing changed. Being a parent is a blessing, not a right. These days the abuse myself, brother and sister suffered would have seen us removed from a home filled with violence, hunger, being bashed and belted when their money was gone. Every week they went to the Casino whether we had enough to eat etc or not. They would beg off relatives to make up the difference. Iv ended a cycle of hopelessness and sadness by making them finally face their own responsibilities. Half my life has been wasted, but I have learnt a valuable lesson. You dont owe your parents a living.

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