Young Carers Day: the students who look after people with dementia

Imagine you are leaving home for the first time to go to university. You pack your boxes with the things you collected growing up, you take the posters off your childhood bedroom wall and you watch as the life you lived for so many years comes to an end.

Imagine that you move now to a new city, filled with people you have never met. Imagine you will start to cook and clean for yourself. Imagine you will have to manage money effectively for the first time.

Imagine that first night in a new life.

Then imagine doing all this with the thought that, back in the life you have left behind, there is someone you love with dementia and that you know this move means you will see each other less.

This an experienced shared by more students than you might realise and for students on medical, health or social care courses, these concerns may be heightened as they learn more about the condition and the way it progresses.

At DMU, we see students with an active caring role running parallel to their own studies.

They may have a relative living either with them at home or whom they regularly support through their visits, providing practical and emotional support.

This is likely to have a huge impact on the student’s experience at university. Importantly, this is not only confined to the student’s academic studies but also to any extra-curricular activities. Students in this group may have less opportunity and time to get involved, or may be put off joining due to their commitments.

Universities and other higher education institutions (HEIs) need to consider ways in which they can make their extra-curricular activities more accessible to students affected by dementia – support should be proactive and create opportunities in the spaces they are comfortable with. It is on the university to go to them rather than wait for the student to engage.

The Covid-19 pandemic has added additional pressures for these students. Students in Covid risk groups, such as those with underlying health conditions or acting as unpaid carers, may choose not to attend classroom activities or placements, particularly courses with a strong clinical or vocational component where face-to-face contact is still required.

This will create missed learning opportunities and a loss of acquired placement hours, meaning that the student’s workload could increase, either by extending the course or making up lost time on future placements.

Online sessions may pose their own challenges for students supporting someone with dementia. This type of learning relies on the student remaining free from distraction and being present. With day services closed and respite services restricted, in addition to a reduction in support from professional carers at home due to increased risk of the virus, carers may find themselves taking on additional caring responsibility.

Chris Knifton

In most HEIs, programmes or courses of study include allocation of a personal tutor whose role is to provide pastoral support throughout the student’s journey. Additionally, mental health support may also be available for carers struggling with anxiety, depression or low mood through services offered at the university.

Staff awareness of not only the warning signs of anxiety and depression but also the challenges of caring for a loved one with dementia, is important so that timely referrals are made to university services.

Sophie Connors

Especially during Covid-19, it is important to remember that being a carer can be lonely and university is a time to find others with common interests and belonging. Both university departments and student unions, however, may struggle to engage students who are carers.

At DMU, joint discussions are currently in place between the university’s own Dementia UK Admiral Nurse and Associate Professor of Dementia Studies, and representatives from DSU to develop greater insight into this marginalised group of carers.

A number of projects are under discussion and soon to be underway with the clear hope of developing guidelines that may promote a more targeted approach both internally, but also more widely across the HEI sector.

Chris Knifton and Sophie Connors