Understanding carers - who they are? what they do? what they need? This information is fundamental to developing any carer support package. However, despite their vital role, there is generally limited understanding about carers, especially those looking after elderly parents - carents. We sat down with Carents to listen to their stories and understand their needs. This is what we learnt.
Understanding carers - the Carents we spoke to
The Carents were mostly women, almost all in their fifties, two thirds were mothers too. All had professional or managerial jobs and the majority had reduced their working hours to accommodate the additional demands of carenting.
The common problems faced by their elderly relatives were (often a combination of):
- Poor mobility
- Poor circulation
- Breathing difficulties
- Sensory impairments – eyesight, hearing
None of the relatives in this focus group had significant difficulties with their memory or understanding.
Understanding carers - how did carents take on their role?
- None of the carents had planned for, or anticipated, becoming informal carers or caregivers for their parents.
- Most carents were prompted to take on care for a parent unexpectedly, often precipitated by a crisis such as the death or sudden illness of one parent. This crisis prompter short term input which steadily progressed to a longer term arrangement.
Understanding carers - what do carents do?
The Carents listed the following activities:
- Grocery and clothing shopping
- Ordering and collecting medicines
- Organising, and accompanying relatives to, health care appointments
- Transportation – to hairdresser, chiropodist, bank or building society, shops, etc
- House cleaning, maintenance and repairs
- Organising Legal advice and financial affairs
- Crisis management – illness, falls, hospital admissions, plumbing or heating failures
- Organising social care such as “ready meals”, carer services,
- Buying and installing/supervising installation of equipment such as stairlifts, bath room and kitchen appliances
- Advocacy and safeguarding for parents vulnerable to fraudsters or opportunists
- Communication – accompanying parents to appointments to overcome communication difficulties arising from hearing, speech or sight impairments or simply the anxieties generated by old age
Understanding carers - how carents relieve pressure on formal services
Many carents reported that they have helped their parents to avoid the need for unplanned hospital or social care by:
- Identifying and reconciling medication errors
- Intervening early on in crisis situations eg, temporary housing after the boiler broke or for convalescence after a hospital admission, or short term intensive support with personal care during a chest infection or after a fall
- Making home modifications to prevent slips, trips and falls
- Providing first aid – dressings, skin care etc
- Sourcing equipment, aids and appliances directly from the internet
- Commissioning public services from private suppliers eg foot care,
Common Carenting Challenges
- Some Carents felt more able than others to take on the responsibility.
- Some of our Carents had a healthcare background and found the health care related challenges easier than others. Those without this specialist knowledge said they felt out of their depth, isolated and unable to adequately manage their parent’s health problems.
- Most Carents admitted to feelings of guilt and anxiety – a sense that they weren’t doing enough, or that they could do better
- All of the Carents found the experience emotionally and practically challenging.
- Many carents compared their experience with parenting but said it was more challenging and much more poorly recognised or supported
Emotional challenges of Carenting
The emotional challenges which Carents described included:
- Time – juggling competing demands on time
- Role strain – juggling the changing and competing demands of elderly parents, children, spouses and work with little time for self
- Impact on relationships – the fallout is significant with an impact on the Carent-Parent relationship, and the Carents spouse or partner, children, siblings and other family members
- Grief – coming to terms with the loss of an active independent parent
- Isolation and lack of support
- An overwhelming Carenting experience of ageing emphasised by negativity and decline
Practical Challenges of Carenting
The Carents described numerous practical challenges including:
- Slow and poor access to mobility aids, equipment and appliances
- Lack of information about available products or services
- Negative experiences with health and social care services
- Negative retail experiences - shops like a jumble sale
- Not being recognised / included as a valuable care partner by health and social care services
- Lack of available products and services to support and promote independent living
- Distance – organising help at a distance without local knowledge
- Time – organising help at short notice
- Exploitation - the combination of crisis management and vulnerability mean that products and services are often sourced by necessity rather than on the basis of quality or value for money
Solutions for Carents
We asked the Carents to describe the type of help which they had found valuable and what they thought could be helpful:
- In general, the carents had minimal experience of accessing support. None of them had accessed any personal support from the charity or public sector other than the NHS for their own health care.
- Only two carents had experience of involving social care for their elderly relative
- Most carents reported that other carents were the best source of knowledge about products and services as well as general empathy, recognition and peer support
- Some carents had self organised to provide peer support and found this invaluable
- Many carents had invested in home adaptations or equipment to enable their relative to cope better at home. They had identified this equipment through word of mouth, or an online market place.
- None of the carents were interested in accessing charitable support
- Many carents reported negative experiences with the health and public sector and felt they could improve things for themselves and their elderly relative if they were given the chance to get more involved and be recognised as a key partner in the same way that parents are
- Many carents said that the focus on online services, call centres, internet and mobile apps etc was of no value to their elderly relatives who were unable to access such services
- Some carents wanted a more positive and uplifting experience
- Some carents wanted access to a “care coordinator” who could help them become more involved, whilst enabling support from a distance
- Some carents wanted more practical support to increase their confidence and capability in relation to providing first aid, or managing medicines
- Some carents wanted to have better access to information about the (public and private sector) services available, costs, timescales etc
- Some carents said they wished they had been better prepared for their newly acquired carenting responsibilities
- Some carents wished that their relative - and the rest of their family - had been better prepared for the transition to dependency
- Some carents wished that the emotional burden was better recognised
- Some carents wanted more timely access to practical support eg home adaptations, short term care including better information about what a “fair price” would be and what “good quality” looked like
- Some carents wanted easy access to “respite carents” to enable them to attend work or family commitments and take a “worry free” holiday
- Some carents wanted short term, flexible, practical and trustworthy support mirroring the nature of the services they provide as Carents – much like they had secured from “babysitters” in the past
Understanding carers - Our Conclusions about Carents
These discussions gave us an in depth and valuable understanding of:
- the personal and economic costs associated with carenting especially for women
- the contribution and needs of carents
- the experience of carents
- how carents could be better recognised and supported
It was these insights which paved the way for The Carents Room