Families and carers

• Involving families and carers in the care of older people is vital.
• Making assumptions regarding the dynamics and interpersonal relationships of the patient’s family or carer is a pitfall.
• Have a method and system to involve and communicate with families and carers.
• Inviting families and carers to case conferences is a good way to involve them in the patient’s care.
• Carer wellbeing is vital to the health of the patient.

General practitioners (GPs) need to be aware of the issues that family and carers face when supporting older people. Carers often require the support of GPs and the broader general practice team for themselves and the people they care for.

In 2015, there were 2.7 million unpaid carers¹ who provided an estimated 1.9 billion hours of unpaid care in Australia.² This number is set to increase significantly as the population continues to age. The replacement value of the unpaid care provided in 2015 was estimated to be more than $1 billion per week in Australia.²

The carer may not be a family member, and the prudent GP will ask the patient and accompanying people who is the main carer for the patient.

Depending on the level of care that is required, a carer may provide care and help to older people from a few hours every other week, to 24-hour care every day of the week. The care and help can take place in residential aged care facilities (RACFs) or the community. Carer wellbeing and support (to minimise their stress and burnout) is especially important for those who care for older people living in the community with dementia.

Supporting older people, whether in RACFs or the community, can be challenging. It is important to recognise that caring for an individual, especially 24 hours a day, places heavy reliance on family members to coordinate, provide and ensure access to required care.³ Caring for a loved one is also a rewarding and meaningful experience for people. There is a tendency to focus on the challenging nature of caring, but highlighting that the time could be remembered as meaningful can help with the carer’s mental state.

Families and carers play a major and ongoing role in providing support and care to older people, allowing the older person to maintain their independence and quality of care. Carers often provide:

• general care and nursing tasks – for example, medications, dressings, mobility
• intimate care – for example, hygiene, toilet needs
• meal support
• emotional support
• domestic care – for example, shopping, cleaning, gardening, paying bills.

For GPs, working constructively with families and carers is integral to providing high-quality healthcare for older people. Importantly, as the closest person to the older person, it is important to encourage the carer to discuss their concerns and suggestions for the older person’s health. The knowledge that carers have is useful in identifying and managing problems the patient may be experiencing. Additionally, family and carers can assist with the cooperation required to effectively implement any patient management plan.

There may be times when the wishes of the family conflict with those of the patient. Examples of this are withholding or requesting treatment, and withholding information regarding care from the older person. The GP’s first priority is to the patient, and advocating for them is vital. Communication with the family and discussing the reasons for decisions prevents most issues. For the rest, the GP’s interpersonal skill and emotional intelligence is needed. 

A multidisciplinary team that includes family and carers can help to identify and respond to the older person’s individual needs (refer to Part B. Collaboration and multidisciplinary team-based care). In turn, this can lead to improved social, emotional and physical wellbeing and enhance the carer’s ability to provide ongoing support and care.

Consent

Even though families and carers play an important role in the healthcare of older people, it is important to acknowledge and respect the older person’s wish for privacy, confidentiality and self-determination. It is important to discuss the issues of information sharing with the older person and obtain their consent to disclose certain health information with their carer.

If the patient is not cognitively intact, gaining consent from the guardian for aspects of care is good practice.

Communicating effectively with the carers and families of older patients prevents problems. When starting to care for older people, arranging a case conference and inviting the family to join is an effective way to establish the relationship and any expectations. In this setting, discussing communication strategies is important. Advise them under which circumstances you will and will not contact them.

For example, ‘If I need to start any long-term medications, I will contact you; however, treating urinary tract infections or other infections will not involve a phone call’.

In addition to providing family and carers with appropriate resources, GPs can also help to support the clinical aspects of their care. Carers often neglect their own health and wellbeing; therefore, the health and wellbeing of carers should be an important part of the care provided to older people. Mental health,⁴ especially depression,⁵ have both been found to be significantly higher in carers.

Like all other aspects of primary healthcare, the support of family and carers requires a multidisciplinary approach. It is important to encourage the carer to seek support for their own health and wellbeing.

After the death of an older person, family members and carers may benefit from follow-up bereavement support from a trusted GP and members of the general practice team. This can involve a phone call or card sent after the death, and face-to-face contact with those identified as needing more support.

Family members and close ones who experience more complicated bereavement may require more formal support. Organisations such as the Australian Centre for Grief and Bereavement can offer support groups and individual grief counselling in various locations across Australia.

Carers with comorbid psychiatric illness or bereavement disorder may also benefit from a referral to a psychologist with experience in complicated bereavement, which may be facilitated by a GP Mental Health Plan for eligible patients.⁶ In complex cases, referral to a psychiatrist may also be warranted.⁷

The bereavement support standards⁸ resource has further information around risk factors, identification and follow up of bereaved carers.

The relationships that are built while working in the aged care setting is one of the benefits. Looking after people gives meaning to not only the families and carers but to all caregivers, including the GPs. Open communication prevents and solves many problems and manages expectations.

It may be necessary for GPs to refer family members and carers to receive external support:

• Carer Gateway (1800 422 737) – provides practical information and resources to support carers.
• Commonwealth Respite and Carelink Centres (1800 052 222) – link carers to a wide range of aged care services to help at home and in the community, including short-term and emergency respite services.
• Carers Australia (1800 242 636) – provides information, support, education, training and counselling.
• Department of Human Services’ financial assistance for carers (132 717) – carer payments and allowances are available for some carers
• Department of Veterans' Affairs (133 254) – provides a variety of support groups and training sessions for carers of veterans and veterans who are carers.
• Independent Living Centres (1300 885 886) – these are information resource centres that display products and equipment to help with day-to-day living activities.
• Young Carers (1800 242 636) – provides information and support groups specifically to meet the needs of young carers.
• Dementia Behaviour Management Advisory Service (1800 699 799) – provides clinical support for people caring for someone living with dementia who is showing behavioural and psychological symptoms.
• Dementia Australia (1800 100 500) – provides information regarding dementia and a dementia support hotline.
• My Aged Care (1800 200 422) – resources and access to services relating to dementia and aged care.