Smita's and Urvashi’s picture

Smita’s and Urvashi’s experience of supporting their mum in hospital

Smita and Urvashi share their difficult experiences of their mum going into hospital. They explain what happened, how being in hospital has affected their mum’s dementia and suggest ways hospitals might become more dementia aware to better support people living with dementia and their families.

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    Our Mum has lived with dementia for just over 3 years. In this time, she has had many hospital admissions for her physical health.

    Dementia awareness among hospital staff

    Unfortunately, we felt that staff had little understanding of dementia and how our mum’s dementia affects her. In January our mum had an injury to her knee and ankle. After a whole day in A&E they finally admitted her to the short stay ward just before midnight. We explained that because she has dementia, she would get incredibly anxious, and that, we needed to settle her in to her bed and give her reassurance. However, our request was not listened to. Lack of dementia awareness among staff was also shown around Incontinence. When our mum asked to go to the toilet, she did not receive support. A few times she soiled herself and slept in it, which was very upsetting and undignified.

    Managing medication in hospital

    We also had problems with mum’s medication in hospital. We told the staff she has dementia, and it was also clearly written in her notes that they needed to be there when she took her medication to make sure she took them. However, numerous times, we got to the hospital and mum’s medication were still on the table or she had dropped them. They also wrote in the notes that she had refused to take medication.

    The need for good communication with the person and families

    When the consultants do their ward rounds in the morning, families aren’t there. They will tell our mum about her treatment and medications, but without acknowledging her dementia and how she might not remember what has been said. Our mum lives with dementia, which is currently affecting her short-term memory. Yes, she can speak. She can have a full conversation, laugh, and joke with you, but she will forget bits of it immediately after. Important information must therefore be shared with families.

    How being in hospital has affected our mum and us

    Each hospital admission has made her dementia worse with her becoming confused, disorientated, and distressed. This has resulted in episodes of delirium when she was discharged home. As family carers, this has left us concerned, upset and stressed. It also had a negative effect on our wellbeing. We think things should be different.

    How hospitals can be more dementia aware

    We appreciate that NHS staff are stretched, and that this is a systemic issue, and not down to individual staff. However, we feel that it is equally important that staff have a basic understanding of certain behaviours with someone living with dementia. Our mum is extremely lucky because she has us to advocate for her and we try to raise awareness with the staff who treat her. But others are not so fortunate.

    We feel strongly that this is an area that needs addressing and have some suggestions for improving hospital admissions for people living with dementia and their families. Hospitals need more support from leading dementia organisations to help them to support patients living with dementia who do not have family or whose carers are unable to be there at crucial times. Similarly, they could be playing a role in educating NHS staff around dementia and on strategies to understand, listen and, communicate to their inpatients living with dementia.

    Find suggestions to help your relative to stay well supported in hospital here

    For advice and tips on helping other people to understand dementia read our article Managing how others treat you and the person you support

    You can also help your relative to share important information about their needs and care whilst they are in hospital. You can download and complete a copy of ‘This is me’ from the Alzheimer’ Society website in English or Welsh.

    Find out more about how you can plan ahead and stay involved in important decisions about your relative’s health and care here.