Family involvement in caring for older people in Norfolk

This Healthwatch Norfolk report explored how family members and friends are involved in caring for older people in Norfolk, what helps or prevents involvement, and what additional support could encourage wider participation in care. The research included 144 survey responses and focus groups with carers. Most respondents were women aged over 55, and many were caring for a spouse, partner or parent. 

The report found that carers provide extensive support, often exceeding 50 hours per week, and many live with the person they care for. Caring responsibilities included shopping, emotional support, managing finances and paperwork, administering medication, personal care, housekeeping and communication with health and social care services. 

Many carers reported that emotional support and social support were the most difficult aspects of caring. Personal care was also frequently identified as challenging. Even when relatives helped with these tasks, carers often felt the support was insufficient and continued to experience significant emotional strain. 

A large proportion of carers said they received no support from other family members. Forty-one per cent of respondents reported that no relatives helped them with caring responsibilities. Where support was provided, daughters and sisters were much more likely to be involved than sons and brothers, reflecting longstanding gender differences in unpaid caring roles. 

The study identified several factors that encourage family involvement in care. The most important facilitators were a sense of family responsibility, positive relationships with both the carer and the cared-for person, and geographical proximity. Family members who lived nearby and had strong relationships were more likely to provide support. 

The biggest barriers to wider family involvement were distance, competing responsibilities and family conflict. Many relatives lived too far away to help regularly, while others were constrained by work commitments, childcare responsibilities or caring for other family members. Some carers also described strained family relationships, disagreements about care and relatives who were unwilling to accept the cared-for person's condition or take on caring tasks. 

The report found that caregiving responsibilities often develop informally rather than through explicit family discussions. Many respondents said caring duties "just evolved" and tended to fall on the person who was most available or lived closest to the individual needing support. As a result, one family member frequently became the primary carer with little practical assistance from others.

Carers said that better support from services could help both them and other family members become more involved. The most common request was for increased access to respite care, allowing primary carers to take regular breaks. Many participants felt that current respite provision was insufficient for the demands they faced. 

Respondents also wanted clearer and more accessible information about available services and support. Many described difficulties navigating health and social care systems and suggested creating a centralised information hub where carers could easily access information, support services, community groups, financial guidance and advice. 

Another significant issue was communication with health and social care services, particularly for relatives who did not live with the person they supported. Carers felt that wider family members sometimes struggled to be recognised or included by professionals despite contributing to care. 

Some participants suggested that family members living at a distance could contribute more effectively if they received advice on how to help remotely, for example by managing finances, paperwork and communication with services, or helping to coordinate care

Overall, the report concludes that caring responsibilities for older people in Norfolk often fall heavily on a single individual, usually a woman, and that many carers feel isolated and unsupported. While some barriers, such as family relationships and geographical distance, are difficult for services to address, improvements in respite provision, information, communication, emotional support and guidance for remote carers could significantly improve carers' experiences and help distribute caring responsibilities more widely.