We know many older people prefer to remain in their own homes for as long as possible as they continue to age. Given the growing incidence of age related illnesses such as dementia, the demand for care and caregivers is growing; and particularly for more informal care arrangements, such as care from family members, typically provided without receipt of payment. Such caregivers are already in short supply so to serious shortages it is important to understand how these caregivers are affected by their caring duties.
While providing care to family members may satisfy the wants of the person requiring care, it does have social and economic implications for the caregiver. In particular, the family caregiver needs to create a balance between providing care and fulfilling their own needs and commitments to avoid care related strain and burnout.
A recent Irish study by Walsh and Murphy (2019) found that the type of care provided affects the strain experienced by family caregivers. Data from a special module in the Quarterly National Household Budget Survey collected by the Central Statistics Office (2009) was employed and econometric analysis was conducted. The full study is available here: LINK
The data from the survey on Irish caregivers reveals most are female (70%) and aged between 25-44 (45%). Less than half are in employment and almost 40% provide 15 or more hours of care per week. These caregivers tend to be providing care for a parent or spouse and almost a quarter live with the family member they are caring for and provide care owing to old age (52%), a physical disability/condition (30%), physical and cognitive disability/condition (9%), cognitive disability/condition (4%) or other (5%). And 60% of caregivers report that they experience caregiver strain.
Caregiver strain was measured using a validated instrument that asks carers 13 questions to determine if their life and lifestyle is affected by the caring they provide (See Figure 2). Carers answer ‘yes’ or ‘no’ to each question. If they answer ‘yes’ to seven or more questions they are considered to have high care related strain. The instrument is useful amongst those providing long-term care.
Figure 1: Caregiver Strain Index
|1. Sleep is disturbed (e.g., because care recipient is in and out of bed or wanders around at night)
|2. It is inconvenient (e.g., because helping takes so much time or it’s a long drive over to help)
|3. It is a physical strain (e.g., because of lifting in and out of a chair; effort or concentration is required)
|4. It is confining (e.g., helping restricts free time or cannot go visiting)
|5. There have been family adjustments (e.g., because helping has disrupted routine; there has been no privacy)
|6. There have been changes in personal plans (e.g., had to turn down a job; could not go on holiday)
|7. There have been emotional adjustments (e.g., because of severe arguments)
|8. Some behaviour is upsetting (e.g., because of incontinence, care recipient has trouble remembering things, or care recipient accuses people of taking things)
|9. It is upsetting to find care recipient has changed so much from his/her former self (e.g., he/she is a different person than he/she used to be)
|10. There have been work adjustments (e.g., because of having to take time off)
|11. It is a financial strain
|12. Feeling completely overwhelmed (e.g., because of worry about care recipient; concerns about how you will manage)
|13. Other affects on lifestyle
|Source: QNHS A3 2009 (CSO, 2010)
The analysis conducted by the authors found that the level of strain caregivers experienced was influenced by a number of conditions. In particular the type of care they were providing influenced strain. If the caregiver helped with personal care, providing physical help, helping with paper work/financial matters, taking the person they are caring for out or administering medicines they were more likely to experience higher levels of strain. Also the amount of care provided matters, the more hours of care a caregiver provides the more prone they are to higher levels of strain.
Unsurprisingly, the person’s condition also impacts caregivers. In particular, caregivers are more likely to experience strain if they are providing care for a family member with a ‘ cognitive disability/condition’, a ‘physical disability/condition’ or ‘physical and cognitive disability/condition’ compared to if the care is required for old age only. In fact, the study finds that caring for a family member with a ‘cognitive disability/condition’ has the largest effect of all on caregiver strain, suggesting that these carers are most at risk of exhibiting strain as a direct result of their caring duties, and may need more tailored supports.
Also, the relationship between the caregiver and the person they are caring for matters. If the caregiver is caring for a close relative such as a parent or a spouse this increases the strain they are experiencing. Similarly, if the caregiver is living with the person they are caring for they are more likely to experience higher levels of strain.
The high rates of stress and strain reported by caregivers is a worrying trend as it likely to have adverse effects on caregivers own health, quality of life and long term ability to provide care. Walsh and Murphy (2019) found that Irish family caregivers are prone to more strain if they are providing help on multiple dimensions to a family member with declining cognitive ability, the more care they provide and if that care is for a parent or spouse. These results are not unique to Ireland and are in line with international findings.
Figure 2: Dr Aileen Murphy & Dr Edel Walsh Presenting Research
We need to acknowledge that while these results from Walsh and Murphy (2019) are recently published they are reliant on data that is now 10 years old. Unfortunately the survey has not been repeated since 2009. Nevertheless, given the financial crisis and budgetary pressure on health and social systems since the data was collected, the situation is unlikely to have improved.
With another fiscal budget around the corner it is important that supports for family caregivers are given due attention, as our population ages and the incidence of conditions such as dementia rise, to ensure demand does not exceed supply, whilst maintaining the dignity and independence of those requiring care.
- Central Statistics Office. Quarterly national household survey carers quarter 3 2009. Ireland: Central Statistics Office, 2010.
- Walsh, E., Murphy, A. Examining the effects of activities of daily living on informal caregiver strain. Journal of Health Services Research & Policy. Aug 7:1355819619848025. doi: 10.1177/1355819619848025.