Supporting practice with older carers: Practice Tool (2025)

Although many older carers care for their spouses or partners, there are also other groups. For example, a quarter of all older carers are parents supporting a middle-aged disabled son or daughter due to the increase in the longevity of adults with physical and/or learning disabilities (Milne and Larkin, 2023).

There is also a growing number of daughters aged 65 years or over caring for a parent aged 80+ (Milne and Larkin, 2023). There is a fragmented picture of the number of children cared for by kinship carers, but the evidence is building. The Valuing Kinship Care report, using Census data from 2021, estimates there are 132,818 children supported by kinship carers (Petrillo, Zhang, Driscoll & Hughes, 2025). Given the figures, it is likely that some older carers are kinship carers.

When older carers care for a spouse or a partner, caring typically takes place in the context of a long-term reciprocal relationship where beliefs about the ‘care contract’ that underpins marriage (or a similar relationship) exist. For similar reasons, older carers may also be ‘invisible’ when caring for an adult child or kinship caring. As a consequence of the long term and embedded nature of their caring role older spouses often do not identify as a carer and remain ‘invisible’ (Age UK, 2019; Larkin, Milne & Henwood, 2022).

Although age-related factors are inevitably contributory factors, older carers’ ill-health is known to be caused and/or exacerbated by caring responsibilities (especially if they are intensive and/or long term), and they have no or very limited input from services. Ill-health usually worsens over time and includes: back issues/pain, hypertension, difficulties sleeping, cardiac problems, strain, fatigue, anxiety and depression.

Forty percent of older carers have depressive symptoms, attributable, in part to several care related risks. These include: isolation and loneliness (because carers do not have the time to socialise and maintain friendships); feeling trapped; and being both emotionally and physically drained (Larkin, Henwood & Milne 2019; Maun, Glaser, & Corna, 2020). 

Older carers may both care for and need help from their spouse or partner. For example, one partner may be physically fit but have a cognitive impairment and the other partner may have cognitive capacity but be in poor physical health. This is described as co-caring or mutual care (Zhang et al., 2022).  

This routinely includes personal care, medical care and physical mobility (Petrie and Kirkup, 2018; Public Health England, 2021). Indeed, survey data shows that older carers are more likely than other groups of carers to be providing intensive care and to be providing many hours of care per week (Office for National Statistics, 2023).

Furthermore, the hours of care per week increases as the carer ages with carers aged 85 years and over providing the most intensive levels of care. In addition, older carers are often managing their own health and disabilities alongside caring (Larkin, Henwood & Milne, 2020).

The ongoing policy shift to provide more care at home instead of in hospitals is likely to increase the range, complexity and intensity of caring tasks older carers have to carry out (Milne and Larkin, 2023). 

This may be due to their own ill-health or death (Greenwood et al., 2019) and  has been found to be a major concern for older parents of middle-aged sons or daughters with learning disabilities (Jordan et al., 2024).

Care-related expenditure tends to be higher for older carers because of the needs of the cared for person. In addition, older carers may have to pay for care services or aids to help them cope e.g. incontinence equipment, a cleaner or home carer. This means older carers are at risk of falling into poverty (Milne and Larkin, 2023).

The way that the overlapping benefits rule works means that only 4 percent of pensioners qualify for Carer’s Allowance (the main benefit for carers). Although this fact continues to cause confusion, anger and distress amongst older carers, successive governments have resisted calls to abolish this rule (Powell et al., 2020). 

This is in part because many older carers are hidden from view and tend not to identify as a carer. Older carers also tend to be reluctant to ask for help and resist the ‘intrusion’ of outsiders (including services). Even when they do seek support, there can be a lack of ‘fit’ between older carers’ needs and service models. One of the main reasons is that services tend to focus on instrumental care tasks such as helping with bathing rather than supporting the intensive emotional work often associated with caring in later life, such as bolstering the cared for person’s role and identity. The cared-for person may also be unwilling to accept input from services.  

(Age UK, 2019; Larkin, Milne & Henwood, 2022; Embracing Carers, 2021; Larkin, Henwood & Milne, 2020).  

These resources were developed based on insights from 16 older carers, gathered through a focus group at a local carers group and four individual telephone interviews. Conversations began with an open question (“Can you tell me about your experiences?”) followed by questions to clarify what the carer saw as key points for professionals to be aware of. The discussions concluded by asking what the carer felt professionals could have done differently that may have been more helpful in their situation.  

Taking a strengths-based approach (Saleeby, 2006; Romeo, 2017) and using Appreciative Inquiry as a frame of reference (Elliott, 2015), the tools seek to both build on what has worked well and to re-frame what has not worked well into what would be happening if professional relationships and services were the best they could be as described in the 16 older carers’ narratives.  

The themes emerging from these discussions form the basis of the five practice tools, illustrated by excerpts from the narratives. In this way the resource aims to provide ‘hands on’ support for evidence-informed practice improvement.