The difficulty, stress and fatigue that can result from the role of caregiving is termed the “carer's burden” or “strain” by researchers. While caregiving can bring satisfaction and rewards, acknowledging the challenges of the role is important for supporting carers fully.
These challenges can stem from:
- increased disease severity resulting in reduced functional ability
- periods of time when neuropsychiatric symptoms such as mood disorders, delusions, hallucinations and behavioural disturbance are present.
A greater sense of burden can be due to:
- the carer being female,
- the carer being the spouse
- additional stressful life events,
- physical health problems,
- a family history of mental health issues,
- poor quality of the relationship between the carer and care receiver,
- low levels of self-esteem
A person with dementia’s interaction with the healthcare system is complex and dependent on both their own health status and that of the carer.
A carer’s exhaustion may lead to a breakdown in the caring, leading to a request for urgent respite care or admission to hospital or a care home. Consequently, recognising these common challenges and providing support to carers before they reach crisis point is critical.
When considering how professionals can empower and support carers, one of the most important areas to emphasise is to ensure carers are identified as carers. Without this identification their needs will not be assessed and they will not gain access to the appropriate support,
Often carers do not identify themselves as carers or ask for support, prioritising the cared for person's needs above their own. It is common to hear comments such as
“I’m only doing what any husband would do..."
I don’t think I should get any support, should I?”
“Why do I need support? - I’m not the person who is ill”
It is important that professionals take the time to discuss a carer's situation with the carer, this can both empower the carer and legitimise their needs and help alleviate feelings of guilt. This in turn, can over time reduce the negative impact caring can have on health and wellbeing.
When a carer has been identified there are a number of ways support can be provided:
- Ensure carers are provided with clear information
- Signpost local services or, if possible, refer carers to services that can provide them with the appropriate support, such as hospital support workers, local authorities or third sector organisations.
Involve carers as “equal partners in care”. This recognises carers as experts in the people they are caring for, with both valuable knowledge to contribute to, and a need for information regarding care planning. The key to this approach is open, honest communication with carers, particularly in regard to information sharing and confidentiality
Do note that not all carers may want support when initially identified but they generally value knowing where they can go should their situation change.
Questions for professionals to consider to provide support for carers:
- Does my place of work have a carer identification protocol? Are records kept of identified carers?
- How can I engage more carers in a conversation about their caring role?
- Do I know where carers can receive more information and support, and can I write a referral myself?
- Are there more ways in which I can involve carers in care planning?
- Do I have consent from the cared for person to share information? If not, do I know what kind of information is appropriate to share with a carer?
Nicola Thomson - Carer Support Worker, Edinburgh Carer Support Team, Edinburgh Health & Social Care Partnership, Edinburgh Nicola.Thomson@nhslothian.scot.nhs.uk
Brodaty, H. & Hadzi-Pavlovic, D. 1990, "Psychosocial Effects on Carers of Living with Persons with Dementia", Australian and New Zealand Journal of Psychiatry, vol. 24, no. 3, pp. 351-361.
Campbell, P. [et al.] 2008, "Determinants of burden in those who care for someone with dementia", International journal of geriatric psychiatry, vol. 23, no. 10, pp. 1078-1085.
Carduff, E. [et al.] 2014, "Understanding the barriers to identifying carers of people with advanced illness in primary care: Triangulating three data sources", BMC Family Practice, vol. 15, no. 1.
Carduff, E. [et al.] 2016, "Piloting a new approach in primary care to identify, assess and support carers of people with terminal illnesses: A feasibility study", BMC Family Practice, vol. 17, no. 1.
Cree, L. [et al.] 2015, "Carers' experiences of involvement in care planning: A qualitative exploration of the facilitators and barriers to engagement with mental health services", BMC Psychiatry, vol. 15, no. 1.
Jarvis, A. & Worth, A. 2005, "Meeting carers' information needs.", Community practitioner : the journal of the Community Practitioners' & Health Visitors' Association, vol. 78, no. 9, pp. 322-326.
Pinfold, V. [et al.] 2004, Positive and inclusive? Effective Ways for Professionals to Involve Carers in Information Sharing, National Co-ordinating Centre for NHS Service Delivery and Organisation, NIHR.
Schulz, R. [et al.] 1995, "Psychiatric and physical morbidity effects of dementia caregiving: Prevalence, correlates, and causes", Gerontologist, vol. 35, no. 6, pp. 771-791.
Wilks, S.E. [et al.] 2011, "Alzheimer's aggression: Influences on caregiver coping and resilience", Journal of Gerontological Social Work, vol. 54, no. 3, pp. 260-275.