A segment of society that is counterweighing some of the challenges arising from an ageing population is informal carers. Although many times informal carers are referred to as a homogenous group, they are in fact a diverse cohort of individuals who may vary by age, gender, type of relationship, socio-economic status, level of education, geographical location and cultural factors, among other aspects.

Cultural expectations affect how individuals approach care work and influence decisions about where and how care is provided. In many cultures, there is a strong sense of duty and responsibility to care. Hence, such characteristics influence the challenges and dynamics of care work, stressing the multifaceted nature of informal care across different contexts.

The type of care provided can include various tasks such as assistance with completing activities of daily living which includes personal care activities, household management, managing medications, and accessing health care services among other activities. Care arrangements also differ with some situations encompassing intense care provided by one individual, while other situations may involve multiple carers.

The carer’s age is another important aspect to consider as it can impact the care work experience and the level of strain informal carers may experience. Young carers potentially have more peers and friends to lean on for support, while old* carers may have to rely more on adult children and/or community resources.

Old carers may also have health concerns of their own, which can impact their ability to provide care effectively. Young carers may be more familiar and reliant on technology to assist with medication reminders or telehealth services, while old carers may have other preferences and different comfort levels with technology.

Moreover, gender differences in care work are significant and have implications for both informal carers and care recipients. Whereas women are more prone to be carers during the life course, men are more likely to care for a spouse or partner in later life. Literature has shown that women carers are more likely to report emotional distress, depression and physical health problems due to care work in contrast to men.

On the other hand, men may be less likely to seek out support for care work, leading to a higher risk of carer burnout and stress. When discussing gender differences in care work, one cannot fail to mention gender-diverse carers who may be lesbian, gay, bisexual, transgender, queer, and any other gender identity that falls outside the traditional male/female binary. 

Research on LGBTQ+ carers has shown that gender-diverse individuals may care for a variety of individuals, including partners, spouses, friends, and family members. They may provide care for older adults who face discrimination, stigma and social isolation due to their sexual orientation or gender identity. It has also been shown that LGBTQ+ carers may face discrimination and stigma due to their sexual orientation or gender identity, which can influence their ability to access services and support.

Another aspect to consider is the type of relationship between the care recipient and the carers. While spousal/partner carers may have a closer, longer and deeper emotional relationship with the care recipient, filial carers may have competing responsibilities such as employment and care for other family members. Spouses may need to consider their own future care needs, while adult children may need to balance caregiving responsibilities with their own family and career obligations.

While provision of care to someone with physical limitations can be physically exhausting, taking care of someone living with dementia can be emotionally taxing

Spousal/partner carers are more likely to co-reside with the care recipient, while adult children may not reside with their ageing parents. This dynamic can impact the care work experience for both parties. Spousal caregivers often provide more hours of support and have less respite from the care role due to co-residing with the care recipient.

Moreover, friends and neighbours may choose to provide care out of compassion, friendship or a sense of community obligation, without the legal responsibilities that family carers often have. Besides, it has been shown that closer carer-care recipient rapports are linked with better overall outcomes for both the carer and the care recipient.

Additionally, the difference between taking care of someone with physical limitations and someone living with dementia lies in the types of challenges and needs that each situation presents. While provision of care to someone with physical limitations can be physically exhausting, taking care of someone living with dementia can be emotionally taxing.

Informal carers of persons living with dementia may have to deal with behavioural and psychological symptoms of dementia which are quite common. These behaviours include but are not limited to aggression, agitation, anxiety, apathy, wandering, sleep disturbances and confusion, among others, adding an added tier of intricacy to care work.

Indeed, it has been documented that carers of people living with dementia provide more care on average than non-dementia carers, and their experiences are often more intense and challenging.

The emotional toll of witnessing the cognitive decline of a significant other can be particularly distressing. People living with dementia may require constant supervision to ensure their safety and well-being, as they may engage in unsafe behaviours due to cognitive impairments.

The carer’s level of education also influences care work. While studies found that carers with higher levels of education had a better understanding of their care recipient’s needs and were better equipped to navigate the healthcare system, other studies found that higher education levels increased the likelihood of carers feeling mentally burdened by care work. Hence, while providing carers with more knowledge and resources to navigate the care role, higher levels of education may also result in amplified awareness of the challenges and intricacies involved, possibly contributing to higher levels of mental burden.

Hence, understanding and taking into account the diversity of informal carers in policies is imperative to design and deliver custom-made interventions and support services which address their dissimilar needs. Moreover, such understanding ensures fairness, equity, efficient and effective services, while at the same time promotes a culture of respect and acknowledgement for the variety of informal carers.

*While many scholars encourage the use of the term ‘older adult’ on the basis that referring to someone as ‘old’ propagates stereotypes, this article follows the consensus in critical gerontology that the term ‘old’ is used in a positive and neutral way akin to how other terms for other age groups are used.

Roberta Sultana is an occupational therapist and a doctoral candidate at the Department of Gerontology and Dementia Studies within the Faculty for Social Well-being at the University of Malta. She is the educational officer for the Maltese Association of Gerontology and Geriatrics.