Valuing Carers in Policy and Practice: What Informal Carers Say About Recognition and Support

This article explores what informal carers of people with dementia say about how their role is recognized and valued, especially in the UK home setting. Many carers feel invisible, undervalued, and isolated, with their contributions often downplayed by terms like 'informal carer' or 'just helping.' Yet their work is immense—worth billions—and comes with deep rewards alongside significant physical, emotional, and financial strain. There are concrete ways to advocate for better recognition, access support, and build a network that truly sees you.

Key points

• Acknowledge yourself as a carer—this is the first step to getting recognition and support.
• Carers of people with dementia often feel invisible, lonely, and undervalued, but their work is worth billions.
• Ask for a carer assessment from your GP or local authority to access respite, financial help, and emotional support.
• Use the term 'family caregiver' or 'unpaid carer' to ensure professionals take your role seriously.
• Join a dementia-specific support group to reduce isolation and share practical tips.
• Plan for the future, including what happens if you can no longer care—this reduces anxiety and ensures continuity.

The Hidden Weight of Caregiving: Why Carers Feel Unseen

Many informal carers—especially those caring for a person with dementia at home—report that their role is not fully recognized by society, healthcare professionals, or even their own families. They often describe themselves as 'just helping out' rather than as caregivers, which can lead to their needs being overlooked. Research shows that older carers, in particular, find the role challenging, with declining physical and emotional health making it harder to access support and maintain social contacts (Source [1]). Loneliness is a major theme, especially for housebound carers and those caring for someone with dementia, and many worry about the future when they might no longer be able to care due to their own ill-health or death (Source [1]). This invisibility is compounded by the fact that the term 'informal carer' can downplay the amount of care provided, as noted in Source [4], which points out that unpaid caregivers are sometimes referred to as 'informal caregivers,' but this term tends to minimize the immense responsibility they carry.

The Gap Between Recognition and Reality: What Carers Actually Need

Carers consistently say that they need more than just a pat on the back—they need practical, systemic support. The top unmet needs include keeping care recipients safe at home, managing emotional and physical stress, finding easy activities to do with the person with dementia, and having enough time for themselves (Source [11]). A majority of carers report needing more information about support services, and they often turn to the Internet or their doctors for help (Source [11]). Yet, many do not self-identify as carers, which means they miss out on assessments and resources that could lighten their load (Source [7]). The COVID-19 pandemic raised awareness of what family caregivers go through, but many still struggle to access consistent, coordinated home care that responds to the specific needs of dementia (Source [3], Source [9]). Carers also experience disenfranchised grief—when their loss isn't recognized because 'it's their job'—whether they are family or paid professionals (Source [8]).

The Rewards and the Strain: A Complex Picture

Despite the challenges, many carers find the role rewarding. They speak of personal fulfillment, of doing what is right, and of learning from the experience (Source [6], Source [17]). One carer said, 'If I needed to do it, I would do it again because they were my parents or this is my spouse' (Source [6]). However, the strain is real: 74% of carers confirm financial strain, and caregiving takes time away from self-care, friendships, hobbies, and family relationships (Source [17]). The economic value of unpaid care is staggering—$340 billion worth of care in the US alone, according to the Alzheimer's Association (Source [16]). This work, if done by a paid professional, would be worth billions, yet carers often feel their contributions are not valued in policy or practice.

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Discuss with your clinician

Discuss with your GP: 'I am a carer and feeling overwhelmed. Can I have a carer assessment and a referral to local support services?'

Ask your doctor: 'Are there any medications or therapies that could help me manage stress, anxiety, or depression related to caregiving?'

If you are struggling with your own health, ask: 'Can I have a health check to monitor for conditions like high blood pressure, which are common in carers?'

Discuss with a social worker: 'What legal arrangements should we have in place for the person with dementia, such as lasting power of attorney?'

If you are considering placing your loved one in a care home, ask: 'What are the options for respite care or permanent placement, and how do we navigate the financial assessment?'

Related guides

• Caregiver self-assessment before making care changes
• Benefits of home care for dementia
• Finding and Paying for Respite Care: A Practical Guide for Dementia Caregivers
• Finding Your People Online: A Guide for Spouse Caregivers of Alzheimer’s and PCA
• Financial resources for paid caregiving
• Caregiver advocacy in Australia
• Disenfranchised Grief: When Your Loss Isn’t Recognized
• planning for your own future care needs
• Preserving Your Identity as a Christian Caregiver
• Meal planning for a person with dementia

Sources

• NICE
• PubMed
• PMC
• AAFP
• Alzheimer's Association
• agingcare.com
• Teepa Snow's Positive Approach to Care
• All Home Care Matters
• AlzOrangeCounty
• mmlearn.org