• Moving on from helping a family member to getting paid care
• Reasons for getting paid care or stepping up the level of care
• Keeping track of care needs and how they change
First thinking about paying for care
People told us how the care they give their loved one increases bit by bit as they realise they are going to need some help from paid care workers.
Elaine received a letter in the post to invite her to join a cohort study. She was already involved in medical research and the timings didn’t work out.
Richard feels medical research should focus more on quality of life rather than treatments to prolong life if those years are spent unwell and in pain.
Mr S talks about how previous research helped him when his two sons were diagnosed with autism. He thinks taking part in medical research is very important to advance medical knowledge and information.
People told us that when their relatives were getting care at home, they had to think about how those care needs were changing and what care they could put in place.
Luke is part of a twins study and every four years he and his twin spend a day at the hospital clinic having medical tests. He describes it as a very medical experience.
Some people told us that the wardens at their sheltered housing were helpful in mentioning when it was time to arrange more care.
Caring from a distance can make it very difficult to manage care. Tracey lived hundreds of miles away from her parents but was responsible for managing their care plan.
Gill doesn’t mind that she won’t personally benefit from the research she contributes to, and says it’s a philanthropic thing.
Some people talked about being worried about their parents becoming less able to move around their home safely. Even with care and equipment such as hoists and stair lifts, it can become difficult to manage at home.
Ian wishes there could be more sharing of data and knowledge with researchers in different countries.
Ian, who has been diagnosed with motor neurone disease (MND), is happy to take part in most medical research apart from anything is likely to cause him pain.
Sometimes an incident leads to a need for more care. A sudden crisis, such as a fall, means that the care situation needs to be reviewed.
Anne receives a Christmas card with a newsletter from the birth cohort study team. She sees it is a courtesy that fits with the study’s interest in how you were brought up in the 1950s.
It can be tricky to keep up the right level of care whether that is paid carers coming in at home or moving into a care home. Jennifer believes it is important to get the right care at the right time; too much care takes away a person’s independence but she says “some people, of course, want to keep their independence beyond their capability and that can be very difficult for the family.”
Douglas has blood samples taken for the research he is in. He has been told he is difficult to take blood samples from but he disagrees and says it is about the skills of the professional.
It can be difficult to manage social care when needs are changing. Some people said that sometimes they felt like they were left on their own to manage their care needs or those of a relative. Some people told us how paid care workers kept records of the care they deliver.
Anne feels taking part in a cohort study is a positive thing to do; it helps others and makes you feel part of society.
Some people told us that they found it helpful to keep a diary of events for the care they were managing. These notes were useful when communicating with paid care workers as well as applying for Attendance Allowance.
