Survey of Adult Carers 2023

The Survey of Adult Carers results provide important insights into the lived experience of people who provide unpaid care for others.

The survey is for adult carers (aged 18 and over) caring for people living in Cambridgeshire (aged 18 and over).

The surveys were sent to a sample of carers in Cambridgeshire (an eligible population extracted using criteria set by NHS England). The eligible population sample of carers was extracted in August 2023.

Surveys were sent out between 1 October to 30 November 2023.

The survey uses a fixed list of questions set by NHS England.

Local councils are not able to amend these questions, but councils do have discretion to add some extra ‘local’ questions.

Some key findings from the survey results are listed below:

• The 2023 survey sample had a much lower percentage of unpaid carers listing learning disability support as the primary support reason for the person they care for compared to 2021.
• In 2021 learning disability support represented 45.7% of cared-for individuals compared to 20% in 2023 (which is more consistent with historical returns).
• The significant increase in younger learning disability clients for 2021 may have been due to difficulties that the council had for that survey in accurately identifying unpaid carers and the subsequent impact this had on the approach to the eligible population for the survey sample. These differences are likely to account for the cohort variations and need to be taken into consideration in any year-on-year analysis.
• 73% of the cared-for individuals in 2023 were over 65.
• In 2023 there was an increase in the number of cared-for individuals with problems connected with ageing and dementia but decreases due to learning disabilities and difficulties. This reflects the larger proportion of cared-for people in older age groups compared to the 2021 survey.
• The proportion of cared-for people using home care increased significantly from 35.2% in 2021 to 46.3% in 2023.
• There was a decrease in unpaid carers who stated they were not in employment due to caring responsibilities, and a significant decrease in the length of time since caring responsibilities started suggesting more new unpaid carers.
• The proportion of unpaid carers who reported that they had been included or consulted in discussions about the person they care for had decreased to 68% in 2023 from 72.7% in 2021 and 75.9% in 2018.

In 2023, 1365 surveys were sent out and 502 unpaid carers responded to the survey, a response rate of 36.8%.

• Unpaid carers known to the council are still predominantly female, however the 2023 survey showed a slight decrease in the percentage of female unpaid carers compared to 2021 (67.9% in 2023 compared to 74.9% in 2021). This is similar to national proportions (68.6% female).
• 91.5% of unpaid carers in the sample were White British. This has reduced from 94.9% in 2021 but remains higher than the proportion of White British unpaid carers nationally. 
• The biggest groups of unpaid carers who responded to the survey were aged 55-64 and 75-84.
• 59.9% of unpaid carers who responded were retired and 30.1% were employed or self-employed. 15.4% indicated that they were not in employment because of their caring responsibilities (a decrease from 21.7% in 2021, a result which may have been impacted by the Covid-19 pandemic).
• 44.6% of unpaid carers declared themselves to have no health condition or disability (an increase from 33.8% in 2021).
• 63.6% of unpaid carers lived with the person they care for, a significant decrease from 77.1% in 2021.

Comments from unpaid carers

“I look after both of my parents who are both in their late 90s. Without the help of social services, carers, OT and the rest of my family they would not be able to be in their house of 69 years. So thank you!”

“Due to change of care agency, which results in inexperience of carers & my lack of confidence in them; I have only had 10 days holiday in the past 4 years.”

“As a first time carer it was difficult to know where to go first and what should be the priority order of needs.”

Age of people who are cared for

The largest age groups of people being cared for were aged 85+ (36.6%) and 75-84 (26.0%). The percentage of people being cared for aged 25-34 decreased significantly from 17.7% in 2021 to 4.7% in 2023 and for people being cared for aged 35-44 from 10.2% in 2021 to 4.7% in 2023.

Reason for caring

The most common reason for the cared for person requiring support was due to a physical disability. This was the same in 2021, however the proportion had decreased from 53.1% to 49.3%. The percentage with dementia rose significantly from 26.6% in 2021 to 40.3% in 2023, as did the percentage with problems connected to ageing (35.4% in 2023 compared with 25.4% in 2021). The percentage with a learning disability or difficulty decreased to 20.0% in 2023 from 45.7% in 2021; however, the 2023 figure was similar to previous survey results in 2018 (19.4%) and 2016 (20.5%).

This section includes indicators where the results for Cambridgeshire have improved since the last survey in 2021.

Overall satisfaction with services received by the cared for person

• Of those who received support from Social Services in the last 12 months, the percentage who were ‘extremely satisfied’ increased slightly to 13.6%, from 13.4% in 2021. The percentage who were ‘very satisfied’ also increased, from 21.0% to 25.7% in 2023. The percentages of people who were ‘quite dissatisfied’, ‘very dissatisfied’ or ‘extremely dissatisfied’ with support services all decreased from 2021.

Comment from an unpaid carer

“I have received great help and signposting to all sorts of services to support my elderly mother - much appreciated. This has happened as a result of case review via social care for elderly. Brilliant service. A brief/easy to understand definition sheet would be helpful, it is hard to navigate benefit claims etc when not aware of what is around/who provides funds etc.”

Having control over daily life

• The percentage of unpaid carers who reported having as much control over their daily life as they wanted increased from 19.4% in 2021 to 24.9%. Those who stated they did not have enough control over daily life fell from 63.6% to 59.4% in 2023. This improvement may be in part due to the impact of the Covid-19 pandemic in 2021; however, the figures are also an improvement on the 2018 survey results. The percentage who reported having no control over their daily life fell from 17.0% in 2021 to 15.7%, although this is still marginally above the national percentage.

Comment from an unpaid carer

“My mum’s current care package allows a good balance for me to offer support and... meet her current needs. I do not feel overwhelmed as I feel sharing her care needs works for her and me… The support of the social worker at her care reviews has been excellent. I am so happy with all the services in place for my mum, and feel this shared care ensures my mum is at the centre of her care.”

Looking after myself

• In respect of getting enough sleep or eating well, the proportion of unpaid carers who felt they looked after themselves rose from 46.8% in 2021 to 50.3% in 2023. Those who felt they only sometimes looked after themselves well enough fell from 33.2% to 28.8%. However, there was a slight increase in the proportion of unpaid carers who felt they were neglecting themselves, from 20.0% in 2021 to 20.8% in 2023.

Personal safety

• The percentage of unpaid carers with no worries about their personal safety increased from 79.4% in 2021 to 84.7% in 2023, and the percentage with some worries fell from 18.2% in 2021 to 12.2% in 2023.

Helpfulness of information and advice

• The results in respect of the helpfulness of information and advice have improved from 2021. A similar proportion of unpaid carers (69%) sought out information and advice. However, of those who sought advice, 25.9% found it ‘very helpful’ compared to 24.6% in 2021. The percentage who found it ‘quite helpful’ rose from 55.0% in 2021 to 57.6% in 2023. The percentage who found the advice ‘quite unhelpful’ or ‘very unhelpful’ had also fallen.

Comments from unpaid carers

“Caring Together has just become my lifeline. They are most helpful answering questions and very patient and understanding. They talk you through your area of problems and getting the right help.”

“Bombarded with so much information from different agencies – completely overwhelmed – too tired most of the time to read and make choices.”

Social contact

• A greater percentage of unpaid carers felt they had as much social contact as they wanted with people they liked, 34.0% in 2023, up from 27.6% in 2021. The percentage who had some social contact but not enough had decreased from 53.9% in 2021 to 48.4% in 2023. There was also a reduction in the percentage of unpaid carers who stated that they had little social contact and felt socially isolated (17.6% in 2023). This was lower than in 2021 (18.5%), 2018 (19.4%) and 2016 (17.7%).

Loneliness

• In the 2023 survey a new question was asked: “How often do you feel lonely?” Responses indicate that unpaid carers in Cambridgeshire felt less lonely that unpaid carers nationally: 11.4% felt lonely ‘Often or always’ (13.3% nationally), and 28.2% felt lonely ‘Some of the time’ (30.8% nationally). 16.6% of carers reported never feeling lonely, compared with 14.5% nationally.

Comments from unpaid carers

“Becoming a carer when you are elderly especially if you live in a more rural community is especially hard. You very quickly become isolated and there are little or no local services to help.”

“I would be grateful for the periodic phone calls to ask how I am and how my elderly mother whom I'm looking after is progressing etc. I feel something like this would be supportive.”

This section includes indicators where the results for Cambridgeshire have worsened since the last survey in 2021.

Access to information and advice

• There were mixed responses to this survey question. A similar proportion of carers sought advice in 2023 compared to 2021 (69%). Of those who sought advice, the percentage who found it ‘very easy to find’ decreased from 13.5% in 2021 to 12.6% in 2023, while the percentage who found it ‘fairly easy to find’ increased from 39.8% in 2021 to 44.9% in 2023. 13.5% found it ‘very difficult to find’, an increase from 11.7% in 2021. Responses to this question were more positive nationally than in Cambridgeshire.

Comment from an unpaid carer

“Being a carer it’s extremely difficult to have time to make calls to services and end up spending more time waiting for an answer after going through the options. When you need help and advice you need to call just one number and one person, not be pushed from pillar to post.”

Carers feeling consulted with

• Questions in relation to unpaid carers engagement with care and support planning for the person they supported were not as positive as in 2021. The proportion who had not been aware of any discussions in the last 12 months had decreased slightly, from 21.7% in 2021 to 20.7% in 2023. Of those who were aware of discussions taking place, the proportion of unpaid carers who said they ‘always felt involved or consulted’ decreased from 42.4% in 2021 to 40.4% and those who ‘usually felt involved or consulted’ decreased from 33.2% in 2021 to 32.0%.

Comments from unpaid carers

“From point of referral to initial assessment took months and only happened when I complained.”

“Services do not reflect diversity of our family. I find it difficult to be positive when my requests for assessments, support, information services are met with long delays and negativity.”

“From the moment the services were involved I felt supported and involved in any decisions and choice was provided. The adult support coordinator was really proactive and supportive, she made the whole experience of reaching out for support much better and easy to navigate.”

Financial difficulties

• The percentage of unpaid carers reporting no financial difficulties caused by their caring role in the last 12 months decreased from 58.3% in 2021 to 56.6% in 2023. Those responding that they had faced a financial impact to some extent has increased from 33.7% in 2021 to 35.8% in 2023. However, those reporting a lot of financial difficulties fell slightly, from 7.9% in 2021 to 7.5% in 2023. National responses show an increase in the proportion of unpaid carers experiencing financial difficulties.

Comment from an unpaid carer

“I worry that the care and financial support mum received is in direct relation to my ability to fill in, often quite complex forms.”

This section compares Cambridgeshire's results with the national average results.

Indicators where Cambridgeshire's results were better than the national average

Overall satisfaction with the support services received by themselves and the cared for person (excluding those who have not received any support or services from Social Services in the last 12 months)

Cambridgeshire’s result for ‘I am extremely or very satisfied’ was 39.3%. The national result was 36.8%.

Having control over daily life

Cambridgeshire’s result for ‘I have as much control over my daily life as I want’ was 24.9%. The national result was 21.5%.

Looking after myself

Cambridgeshire’s result for ‘I look after myself’ was 50.3%. The national result was 46.7%.

Personal safety

Cambridgeshire’s result for ‘I have no worries about my personal safety’ was 84.7%. The national result was 81.0%.

Social contact

Cambridgeshire’s result for ‘I have as much contact as I want with people I like’ was 34.0%. The national result was 30.0%.

Loneliness

Cambridgeshire’s results for the new survey question “How often do you feel lonely?” were ‘often or always’ 11.4% and ‘some of the time’ 28.2%. The national results were 13.3% and 30.8% respectively.

Financial difficulties

Cambridgeshire’s result for the question “In the last 12 months, has caring caused you financial difficulties?” was 56.6% had experienced ‘no financial difficulties’. The national result was 53.4%.

Carers feeling consulted with (excluding those who were not aware of any discussions)

Cambridgeshire’s result for ‘I always or usually felt involved or consulted’ was 68%. The national result was 66.4%.

Indicators where Cambridgeshire's results were worse than the national average

Helpfulness of information and advice (excluding those who did not try to find information or advice)

Cambridgeshire’s result was 83.5% found the information and advice ‘very or quite helpful’ The national result was 85.2%.

Access to information and advice (excluding those who did not try to find information and advice about support, services or benefits)

Cambridgeshire’s result was 57.5% found access to information and advice ‘very easy or fairly easy to find’. The national result was 59%.

The Survey of Adult Carers provides valuable local insights into unpaid carers and their experiences. Also, it feeds a number of national indicators within the Adult Social Care Outcomes Framework (ASCOF).

The results show that four out of five of the ASCOF indicators have improved since the last survey in 2021.

In addition to the set national survey questions, councils are able to choose additional local questions, where they think these may add value, from an NHS England list of approved extra questions. The Carers Partnership Board membership chose these local questions from a shortlist of extra questions from the NHS England list.

Have you found it easy or difficult to get the support or services you need as a carer in the last 12 months? The services may be provided by different organisations, such as a voluntary organisation, a private agency or Social Services.

Of those unpaid carers who said that they needed support or services, 52.4% said that they found it ‘very or quite easy’ to get the services or support they needed, 28.7% found it ‘quite difficult’ and 18.9% found it ‘very difficult’.

How is your health in general?

47% of unpaid carers said that their health was ‘very good or good’, 42.1% said that their health was fair, and 10.9% said that their health was ‘bad or very bad’.

What do you use to find information and advice about support, services or benefits?

The top responses to this question were that 34% of unpaid carers said that they used the ‘internet’, 21.7% said that they used ‘family and friends’, 14.0% said that they used ‘advice from a professional’ and 11.9% said they used ‘advice from a voluntary or community group’.

The responses to the survey and the analysis will be used to inform our service improvement and service development work to support unpaid carers. This will include ensuring that the Survey of Adult Carers feedback links into our All-Age Carers Strategy action plan.

Also, we will share the survey results with staff and stakeholders, including the Carers Partnership Board and the Care Quality Commission.