Why Family Care Givers should be paid (fairly)
A Call for Change in the Face of Adversity
Emma, our founder and CEO writes about her frustrations and the disparity when supporting unpaid carers.
“Do I need to start a government petition? Today, I want to spotlight the journey of a courageous couple in their 40s who, after health challenges, have lost their home, jobs, and independence. They have turned to multiple care providers, hoping for support to rebuild their lives. Sadly, each care provider has fallen short, leaving them feeling overlooked and unsupported in a system meant to empower. This story is far too common. Fighting for care funding shouldn't be an additional struggle for those already facing enormous challenges. This couple’s resilience speaks volumes, yet it shouldn't take resilience alone to secure essential support. As we aim to shape a more compassionate future, let’s advocate for systemic improvements that bring genuine support to those in need. This couple are not able to afford the expensive solicitor’s fees to help them obtain special permission for the Direct Payment to be paid to the husband. The main problem here: they shouldn’t need a solicitor. The government should advocate for family carers being paid to care for a loved one. Read on to find out why.
Here is their story:
https://www.bbc.co.uk/news/articles/c4g9n0kkllko
Their story is a call to action for us all: better policies, enhanced accountability for care companies, and unwavering compassion in every corner of the care sector. Let's work towards a world where every person receives the care they deserve.
In Swindon, UK, where this couple live, it is possible for a family member to receive direct payments to provide care for a loved one, but there are some specific conditions. Typically, direct payments are offered to allow individuals to arrange their own care rather than receiving services directly from the local council. Under UK regulations, a family member may be paid through direct payments if:
1. They are not the spouse or partner of the person requiring care.
2. They do not live in the same household (in most cases).
However, exceptions can be made if it’s deemed necessary for the person’s wellbeing and no suitable alternatives are available. If the council assesses that hiring a family member is in the best interest of the care recipient and no other suitable options exist, they may approve payments to a family member. It’s essential to work with the local authority, as they will assess eligibility and provide specific guidance on using direct payments for family caregivers, however, they are already overburdened and overstretched.
As of the 2024/25 period, Carer’s Allowance in the UK is £81.90 per week, equating to approximately £4,258 annually. To qualify, you must care for someone at least 35 hours weekly and earn below £151 weekly after taxes and allowable expenses like pension contributions and work-related expenses. This allowance is considered taxable income, which may affect other benefits you or the person you care for receive, such as Universal Credit or Housing Benefit, Carer’s Allowance and the earnings limit.
Paying family members to care for loved ones has benefits that extend to the caregivers, the healthcare system, and society at large. In the UK, allowing direct payments to family caregivers provides several key advantages:
1. Personalised, Consistent Care: Family caregivers are often more attuned to the needs and preferences of their loved ones, leading to higher-quality and more individualised care than might be achieved through rotating external caregivers
2. Reduced Strain on Public Healthcare Services: Family caregiving can lessen the demand for publicly funded care services and reduce hospital readmissions. This can help alleviate strain on the NHS, especially amid staffing shortages and increased demand in social care.
3. Financial and Emotional Support for Caregivers: Caring for a loved one can be both emotionally and financially challenging. Allowing payments provides financial relief, enabling caregivers to sustain their role without sacrificing personal financial stability. This approach acknowledges the economic value of caregiving, which is otherwise unpaid work.
4. Community Stability and Better Health Outcomes: Familiar and stable environments are often associated with improved health outcomes for those receiving care. Remaining at home with family caregivers can contribute to well-being and slow the progression of conditions like dementia.
(The cost of dementia care in the UK is projected to nearly double over the next 20 years, creating a substantial increase in taxpayer burden compared to the last two decades. Currently, dementia costs the UK about £42 billion annually, a figure expected to rise to approximately £90 billion by 2040. This jump stems from rising dementia cases and higher costs associated with advanced care needs.)
Here Are Some Examples From Other Countries
Several countries, such as Germany, Norway, and the United States, also support family caregivers financially, each with specific benefits:
- Germany provides a flexible “care allowance” to family members, which can be used to cover care costs at home. This model not only offers choice but also helps reduce public healthcare costs by encouraging home care, which is typically less expensive than institutionalized care.
- Norway provides paid leave and pensions for family caregivers, allowing them to focus on caregiving responsibilities without sacrificing long-term financial security.
- United States (specific states) offer Medicaid-based programs allowing family members to be hired as paid caregivers. This arrangement gives families more control over care plans, improving patient satisfaction and helping retain employment for caregivers who might otherwise need to leave work entirely. In each case, paying family caregivers fosters better community health and reduces public expenditure on long-term institutional care, illustrating a sustainable way to address the growing need for elderly and disability care across aging populations.
Paying family members to care for loved ones has benefits that extend to the caregivers, the healthcare system, and society at large. In the UK, allowing direct payments to family caregivers provides several key advantages:
1. Personalised, Consistent Care: Family caregivers are often more attuned to the needs and preferences of their loved ones, leading to higher-quality and more individualised care than might be achieved through rotating external caregivers.
2. Reduced Strain on Public Healthcare Services: Family caregiving can lessen the demand for publicly funded care services and reduce hospital readmissions. This can help alleviate strain on the NHS, especially amid staffing shortages and increased demand in social care.
3. Financial and Emotional Support for Caregivers: Caring for a loved one can be both emotionally and financially challenging. Allowing payments provides financial relief, enabling caregivers to sustain their role without sacrificing personal financial stability. This approach acknowledges the economic value of caregiving, which is otherwise unpaid work.
4. Community Stability and Better Health Outcomes: Familiar and stable environments are often associated with improved health outcomes for those receiving care. Remaining at home with family caregivers can contribute to well-being and slow the progression of conditions like dementia.
In the UK, family members who provide care are eligible for Carer's Allowance of £81.90 per week, but this support falls short compared to countries like Germany, Norway, and the US, which offer more extensive funding and resources for family caregivers. Germany offers a robust program through long-term care insurance, allowing family caregivers to receive up to €1,800 per month based on care needs. Caregivers also access respite services and additional financial support to maintain employment. Norway, meanwhile, implements a strategy that emphasises supporting informal carers with subsidies, flexible working arrangements, and services to avoid care burnout—a significant investment in informal care, which constitutes around 50% of the country’s caregiving support. The US has state and federal programs like Medicaid waivers and Veterans Affairs benefits that compensate family caregivers. Payment varies by state but can be between $500 and $2,500 monthly depending on the state and care recipient’s eligibility. Some US states also offer tax breaks for caregivers, reducing financial strain. These funding programs benefit governments by alleviating pressure on formal healthcare systems, allowing family caregivers to provide care that would otherwise be costly if outsourced. Additionally, these investments in caregiver support aim to prevent caregiver burnout and improve mental and physical well-being, ultimately fostering healthier communities.
In contrast, the UK's lower financial support for family caregivers places more stress on informal carers, often leading to financial strain and personal sacrifice.
Expanding UK funding could both improve family well-being and reduce long-term healthcare costs as seen in other countries.”
