Impact of the caring role on carers

Caring for a person with any type of disability or chronic condition can be physically, mentally, emotionally and economically demanding, and the burden of caregiving is particularly high for those caring for a person with dementia. Factors influencing the level of caregiving burden include the personal characteristics of carers and care recipients, living arrangements, employment and financial situation, and support systems available from formal services and other family and friends.

This page presents information from the 2022 Australian Bureau of Statistics Survey of Disability, Ageing and Carers (SDAC) on the impact of caring for a person with dementia on the primary carer’s physical and emotional wellbeing, relationships, employment and financial situation.

Impacts on carers’ physical and emotional health and wellbeing

The most commonly reported physical or emotional impacts among primary carers of people with dementia were:

  • feeling weary or lacking energy (38%)
  • feeling worried or depressed (28%)
  • being diagnosed with a stress related illness (15%)
  • frequently feeling angry or resentful (12%).

Around 45% of primary carers of people with dementia reported they had 1 or more physical or emotional impacts due to the caring role compared with 38% of primary carers of people without dementia. This difference was not statistically significant (Figure 6.5; Table S6.9).

Figure 6.5: Primary carers of people with and without dementia in 2022: estimated percentage by physical and emotional impacts of the caring role

Figure 6.5 is a bar graph showing the estimated percentage of primary carers of people with dementia and primary carers of people without dementia in 2022 by the physical and emotional impacts experienced since taking on the caring role. Around one-half of primary carers of people with dementia as well as one-third of primary carers of people without dementia reported they had 1 or more physical or emotional impacts due to the caring role. The most commonly reported impact by primary carers of people with dementia was feeling weary or lacking energy. In addition, just over one-quarter of primary carers of people with dementia reported frequently feeling worried or depressed.

Figure 6.5 is a bar graph showing the estimated percentage of primary carers of people with dementia and primary carers of people without dementia in 2022 by the physical and emotional impacts experienced since taking on the caring role. Around one-half of primary carers of people with dementia as well as one-third of primary carers of people without dementia reported they had 1 or more physical or emotional impacts due to the caring role. The most commonly reported impact by primary carers of people with dementia was feeling weary or lacking energy. In addition, just over one-quarter of primary carers of people with dementia reported frequently feeling worried or depressed.

Notes:

  1. As carers could state multiple responses, percentages will sum to more than 100% for each type of carer.
  2. Estimates for primary carers of people with dementia who reported the following physical and emotional impacts of the caring role: 'frequently felt angry or resentful' and 'had been diagnosed with a stress related illness' have a relative standard error between 25% and 50% and should be used with caution.
  3. 'Had one or more physical and/or emotional impacts due to the caring role' refers to people who reported a combination of the following responses: 'felt weary or lacked energy', 'frequently felt angry or resentful', 'frequently felt worried or depressed', and/or 'had been diagnosed with a stress related illness'.

Sleep is essential to improving and maintaining a person’s health and wellbeing. However, caring responsibilities can directly impact the length and quality of a carer’s sleep.

Half of all primary carers of people with dementia reported their sleep was interrupted frequently (28%) or occasionally (22%) due to the caring role. By comparison, 1 in 3 primary carers of people without dementia reported their sleep was interrupted frequently (19%) or occasionally (15%) due to the caring role. This difference was not statistically significant (Figure 6.6; Table S6.10).

Figure 6.6: Primary carers of people with and without dementia in 2022: estimated percentage by sleep disturbances due to the caring role

Figure 6.6 is a bar graph showing the estimated percentage of primary carers of people with dementia and primary carers of people without dementia in 2022 by whether they experienced sleep disturbances since taking on the caring role. Over one-quarter of primary carers of people with dementia reported their sleep was interrupted frequently and almost one-quarter reported their sleep was interrupted occasionally due to the caring role. Primary carers of people without dementia were less likely to report their sleep was interrupted frequently or occasionally.

Figure 6.6 is a bar graph showing the estimated percentage of primary carers of people with dementia and primary carers of people without dementia in 2022 by whether they experienced sleep disturbances since taking on the caring role. Over one-quarter of primary carers of people with dementia reported their sleep was interrupted frequently and almost one-quarter reported their sleep was interrupted occasionally due to the caring role. Primary carers of people without dementia were less likely to report their sleep was interrupted frequently or occasionally.

Notes:

  1. 'Other' includes the following responses: 'not stated' and 'sleep interrupted but frequency not stated'.
  2. Estimates for primary carers of people with dementia who reported the following level of sleep: 'other' and 'sleep interrupted occasionally', have a relative standard error between 25% and 50% and should be interpreted with caution.

Impact of the caring role on carers’ relationship with the care recipient, family and friends

The caring role can have both positive and negative impacts on the relationship between the carer and the recipient of care, as well as on the carer’s relationship to others.

Primary carers of people with dementia reported that the caring role:

  • strained their relationship with the care recipient (28% of primary carers of people with dementia). This was reported significantly less by primary carers of people without dementia (13%).
  • affected their relationship with other family members who live in the same house (12%). This was reported significantly more by primary carers of people without dementia (27%).
  • resulted in them losing touch with friends (23%). This was reported similarly by primary carers of people without dementia (20%) (Figure 6.7; Table S6.11).

Figure 6.7: Primary carers of people with and without dementia in 2022: estimated percentage by impact of the caring role on others

Figure 6.7 is a bar graph showing the estimated percentage of primary carers of people with dementia and primary carers of people without dementia in 2022 by the impact of the caring role on the carer’s relationship with the care recipient, family and friends. Primary carers of people with dementia were more likely to report that their relationship to the care recipient was strained while primary carers of people without dementia were more likely to report that the caring role brought them close to the care recipient. Just over one-third of primary carers of dementia reported not having any other co-resident family members.

Figure 6.7 is a bar graph showing the estimated percentage of primary carers of people with dementia and primary carers of people without dementia in 2022 by the impact of the caring role on the carer’s relationship with the care recipient, family and friends. Primary carers of people with dementia were more likely to report that their relationship to the care recipient was strained while primary carers of people without dementia were more likely to report that the caring role brought them close to the care recipient. Just over one-third of primary carers of dementia reported not having any other co-resident family members.

Notes:

  1. 'Friendships are unaffected or increased' includes the following responses: 'friendships unaffected' and 'circle of friends has increased'.
  2. 'Relationship affected' includes the following responses: 'less time to spend with them', 'brought closer together', 'relationship strained' and 'relationship affected in another way'.
  3. Estimates for primary carers of people with dementia for the following responses: 'brought closer together', 'circle of friends has changed' and 'relationship affected' have a relative standard error between 25% and 50% and should be interpreted with caution.  
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