Caring for an older relative

By Miriam Valencia, ASC’s Head of Digital Content 

The challenges of taking on a caring role 

When we talk to family members who are supporting older relatives, we hear about the impact of having to engage with the social care system for the first time. When an older person gets to a stage in life that they are unable to manage safely without support, this brings both practical, financial and emotional considerations. 

There are cases where a difficult event such as an accident, a hospital admission or an illness is the catalyst for thinking about social care. Family members tell us that this can be a real jolt. ‘I never thought about my mum as old,’ explained a participant in our research.  

For older people who are faced with paying towards social care, this can cause fear and worry. Family carers tell us that they have found it difficult to convince parents who are habitually cautious about money to pay for support. 

Decision-making is also stressful – especially when there are questions over the older person’s capacity to make major decisions about their care if their condition has affected their cognition. 

If an older person needs to move – for example to a care home – this can also cause an experience of loss – one participant talked about the sale of a family home as ‘a bereavement’.  

Participants in our research also talked about their difficulty finding advice and guidance. They described stumbling upon information that they wished they had known earlier. Dealing with caring for older relatives - as well as perhaps their own job, parenting and other existing demands -  left them little time to get to grips with the system. 

What carers told us they needed 

We heard from carers who were looking back at their experiences during this difficult transition where parents or older relatives began to need social care. They told us what they felt was important for people to know when they found themselves in this situation. This information included: 

• Knowledge about mental capacity, lasting power of attorney and decision-making. 

• What rights their parents or family members have if they have savings or income that mean that the local authority is not required to pay towards their care. 

• NHS Continuing Healthcare – funding for social care from the NHS which is for people who have a primary health-care need. 

• What rights people have at the end of their lives, including welfare benefits. 

• How to go about finding a care home that will be right for their relatives. 

• Managing the emotional, financial and physical challenges of being a carer. 

How AccessAva can help 

The system can be particularly complex for this group of people, as their financial situation and how their condition affects them can mean they have access to different systems and have a right to different types of support. 

AccessAva a service that allows the user to learn about the social care system, how to organise care, and what support their relative may be entitled to. AccessAva explains what the law says in bite-sized chunks and provides enough information for the user to feel confident that they can speak with authority to professionals about their family member’s rights.  

As one of our users told us: ‘To have a template letter to download was really helpful […] a good and informed resource with actual usable resources.’ 

As well as the rights of an older relative, it is of course very important for carers to have the right support themselves. Family members often do not realise that the Care Act 2014 also gives them the right to support to help them manage their caring role alongside work and other commitments. AccessAva has important information, template letters and factsheets that will help carers request that support. 

As an organisation we have a lot of experience of supporting people who are trying to navigate this complex system. We have learned that having the right information and sending a letter with reference to the law can transform your chances of getting the outcome that you and your relative need.  

As well as providing essential information, AccessAva empowers users to take action by providing the tools they need to confidently request services and enforce their rights. Examples are: a template letter challenging the council’s refusal to assess a person because their savings are too high, or a template letter challenging a decision that has been made on behalf of someone who lacks capacity, or a checklist help you find the right care home for a parent.  

How you can help 

Our conversations with family members give us insight into what it feels like to be at a transitional time where an older relative’s need for care becomes apparent. Talking to people who draw on social care, their relatives and supporters, means that we are able to respond to what our users need. We are keen to hear from anyone who might be interested in getting involved in that process. You can sign up to receive alerts here and earn points towards vouchers to thank you for your participation.