Caregivers who are older spouses/partners of people with Alzheimer's disease (AD) have double the responsibilities of health and safety for themselves and their partners as opposed to those who are not caregivers. In America in 2021, there are 6.2 million people aged 65 years and above who live with AD.
AD accounts for 60-80% of all Dementia cases among people who receive any sort of support. Currently, there are 4.1 million cases of Dementia in India, and this number is estimated to double by 2030, and triple by 2050.
Around 142 hours of support is provided by familial caregivers per month on average, according to recent estimates. Research also suggests that along with familial carers’ physical and mental health, the responsibility of caregiving also negatively affects employment, relationships, memory, attention, decision making, and financial security.
There is a general lack of research on older spousal carers. For example, participants in various recent research studies on the effects of informal care on mental health are a mixed group of unpaid familial carers, and there is not enough research studies conducted in the last 10 years specifically about older spousal carers (results drawn from a dissertation study conducted in Newcastle University). As of 2020 in the UK, around 14% of informal carers were aged 55 to 64 years, 10% were aged 65 to 74 years, 8% were aged 75 to 84 years, and 4% were 85 years and above in age. Statistics for Indian elderly care providers were not available. Many studies suggest that more often than not, spousal/partner carers neglect their own health and wellbeing by delaying seeking help and assistance, and prioritise their caregiving duties for their partner as they have an emotionally intimate bond with them. Currently in India, unpaid or informal carers do not receive any allowance or extra paid leave from work for their caregiving duties. This can become especially difficult for the care providers who are elderly and are taking care of their spouses while working and paying for their household. More concrete research on spousal/partner carers can provide enough data for future policymakers to design policies to support the carers i.e., financial support and so on.
There is little literature examining the impact of spousal/partner caregivers’ (of AD) on their own mental health. Out of the 20 studies published in the last 10 years reporting the anxiety and depression in familial caregivers, only 4 studies solely included spouses/partners as their target population. The rest of the studies included all familial caregivers with a range of 12% to 70% of spousal/partner caretakers within their target population. As a result, the current evidence is insufficient in terms of quantity and quality to clarify the impact of caregiving on a spouse/partner. Nonetheless, it has been observed that spousal caregivers of people with AD are at risk of developing depressive symptoms, along with the caregiver’s burden. The issue of anxiety in spousal caregivers also needs to be addressed.
Specific measures like educating the spouse/partner caregivers regarding the mental health risks of taking up a caregiver’s role and suggesting them to take part in different support groups can be provided. Policies such as caregivers’ mental health assessment at every visit to the clinic or hospital can benefit a vast section of society. In terms of research, the issue of the mental health of spousal caregivers or life-partners of people with AD needs to be explored. Increased longevity and an increase in the number of people suffering from this disease may cause an increasing number of spouses and life partners to accept the role of caregiving. It is also observed throughout the available literature, that there are more female care providers than male. By contrast, it has been concluded that the percentage of women with AD is higher than men. Research about why there are more female caregivers than male caregivers, despite women being at a higher risk of being affected by AD, needs to be conducted to know more about why the gender difference is extensive.
Research findings from future studies can contribute to formulating more effective and practical policies and clinical practices, especially in uncertain situations (like COVID-19) that also lead to increased stress and strain on spousal/partner caregivers.
During the first COVID-19 lockdown in 2020, the criteria for support bubbles in the UK had prevented spousal/partner carers and the partner with AD from forming a bubble with another household. These new rules resulted in care providers spending more of their time caring for their partner with AD with decreased social support, further impacting their carer burden, stress, and mental health. Additional pressures for spousal/partner caregivers included reduced professional support, national restrictions, and limited access to social support. The caregivers faced more challenges than usual, both emotionally and mentally. Additionally, the stress levels in caregivers were also high because of the COVID-19 outbreak. With more research, informed policies, and clinical practices, spouses/partners could have received more support and attention during COVID-19 pandemic.
The recent crisis of COVID-19 should be a wake-up call to understand the importance and need of more robust research on elderly caregivers. Not just for elderly caregivers of people with AD, but all diseases that lead to spouses/partners taking up full-time carer roles. With more adequate research, more specific policies can come into action sooner and help the community by ensuring that everyone receives focused care and support.
Ayesha Haque
