13 Aug 2015

Why should we engage with families of those in residential care?

I WILL never forget entering an aged care facility in Sydney some years ago and observing several relatives in the lounge room making cups of tea or coffee for themselves and sitting quietly alone deep in their thoughts. I note some did this before the visits, others after. It would have been difficult observing a loved one’s health declining and feeling helpless and unable to improve the circumstance. It is not necessarily something that you would want to talk to a stranger about. Often those emotions are private. Being a carer of a loved one who is in residential care can be rewarding but at times it could be frightening, overwhelming, sad and frustrating. Last week at a Carer Information Session, attended by over 30 relatives from various facilities throughout Sydney, each was asked to write a word on the board to describe how they felt about being a carer. The written words were not dissimilar to the emotions mentioned above. One elderly gentleman whose wife is in a dementia specific unit wrote ALL OF THE ABOVE. Clearly, with the declining health in their loved ones who are no longer able to live independently, families have great need for support in dealing with their own emotions and understanding how best they can help.

It is only in the recent years that action has been taken towards improved awareness of the importance of family support in residential care. This has been demonstrated with an increased interest and requests for training programs educating staff on how to best support families as well as holding information sessions for relatives. Distressed relatives can present additional challenges for aged care staff, whose training is limited to ensuring personal care needs are met. As the preliminary findings from my PhD research from Macquarie University suggests, aged care workers do not have skills in mental health or understanding when someone may need support from mental health experts. Many aged care workers reported using life skills in those situations. Early researchers (Bates, 1968 and Blum, 1960) reported that the family members were found as interfering, disruptive, and critical of professional policies, staff, and the overall facility environment. These results may suggest that families are advocating for their loved ones and that perhaps families may need additional education about the condition which their loved one has (such as muscular dystrophy or dementia). These results may further suggest that families are grieving the loss of the relationship with their loved one. Family members may need additional support to assist them at this difficult time in their lives. Knowing where they can find support is paramount.

The value of family cannot be understated. As human beings our family is our primary social unit. Family may include all individuals who are part of the central core in the support network of individuals including non-family carers. There are many reasons why it is important for facilities to support families. These include better understanding of the resident and their needs, provision of socio-emotional care and to deliver advocacy and encouragement or assistance with the provision of personal care. Families are particularly integral in reducing resident isolation, which is a significant problem for the elderly. Elderly with poor mental health are particularly prone to isolation and present as an additional risk of suicide. A recently longitudinal study from the UK indicates that isolation kills more elderly people than smoking and obesity (Victor & Bowling, 2012).

Unfortunately not all facilities engage well with families. This can be due to poor communication within the family unit, poor communication between staff members, lack of documentation around the family system, family could be living interstate or overseas, staff may not be comfortable and reluctant in discussing behavioural issues or increased care needs with the family and the health status and age of the family member. These are just some of the factors which could contribute towards the breakdown in the communication between families and aged care facilities. Families need aged care staff to acknowledge their journey and the difficulties, personalise the information wherever possible and encourage families to speak with staff about any issues sooner rather than later. Encouraging families to attend meetings and opportunities to meet other families as well as to take residents out of their rooms is important and may improve the overall care of the care recipient.

Finally, it is very important to encourage families to take good care of themselves and practice self-care strategies which includes spending time away from the facilities to rest and recuperate. Where possible, acknowledge the emotional and physical burden on the family and on individual family members of caring for a resident, recognise and allow for different coping styles between individual family members, allow family members the opportunity and privacy to express their concerns and the difficulties they are experiencing, provide reassurance if they are feeling guilty about issues that could include relationship issues, the nature of the admission to facility and offer an intervention such as pastoral care. Chaplains offer wonderful support for families and are integral part of care delivered in residential care setting.

Involving the family is an important component of any care plan and it can have significant effects on the family and the resident’s ability to accept what is happening. Some of the advantages of involving the family include trust in the aged care team, recognition that family members have contributed significantly to the resident’s wellbeing prior to admission, a positive partnership is developed between the care team and the family members and finally the family are better able to cope with separation anxiety and can provide positive benefits for all family members.

The best outcomes in the aged care system are achieved by collaboration within the facility, engaging external providers and most importantly families.

References

Bates RC. Medical Economics Book Division; Oradell, New Jersey: 1968. The fine art of understanding patients.

Blum RH. Management of the doctor-patient relationships. McGraw Hill; New York: 1960.

Victor, C. R., & Bowling, A. (2012). A Longitudinal Analysis of Loneliness Among Older People in Great Britain. The Journal of Psychology, 146(3), 313-331

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