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Young Carers Action Day: Students affected by dementia

As the nation marks Young Carers Action Day, Chris Knifton, Admiral Nurse and Associate Professor for De Montfort University Leicester (DMU) and Sophie Connors, student activities co-ordinator for De Montfort Student Union (DSU) have co-authored a blog to raise awareness of the experiences university students who care for people with dementia regularly face.

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 is an experience 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.

Students with caring roles

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.

Additional pressures during the Covid-19 pandemic

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.

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.

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.

Advice for students who are supporting a family member with dementia:

  • Looking after your own health
    Don’t be afraid to ask for help if things get a bit too much for you. Feelings of depression or that you cannot cope are signs that you should visit your GP to get these issues identified and treated.
  • Reaching out to vulnerable family members
    Consider how best to contact them, whether by phone, or even making video calls, so you can see each other. You may also want to consider writing them letters or sending postcards about your day. Remember that although you may be worried about them, they may also be worried about you.
  • Manage your time
    At the beginning of each academic year, you could plot all your submission dates and exam periods on a chart. This will help you identify busy periods so you don’t become overwhelmed. You may be able to share this chart with family, friends, or your personal tutor who may be able to help out at these busy times. Your university may also provide additional guidance for supporting students with time management.
  • Seek out advice and support from university
    Most universities have a Disability Advice and Support (DSA) team that aims to ensure that all their students have the opportunity to fully participate in their chosen course and university experience. Most universities also offer their students support for mental health, such as a Mental Health Inclusion team. These teams offer support around practical, day to day solutions to various issues students may have. You can also contact our dementia specialist Admiral Nurses for advice and support.