Caring for someone with dementia – a novice’s insights

I’ve recently been carrying out research into dementia – the huge, overwhelming topic that most people tend to steer away from because it’s so vast and not particularly fun! It is however incredibly interesting and important that more people become aware and understand the disease (yes, it’s a disease, not a condition); these shocking statistics are taken from the Alzheimer’s Society website:

  • There are currently about 750,000 people in the UK with a form of dementia
  • There are over 16,000 people under 65 with dementia in the UK
  • One in 14 people over 65 years of age and one in six people over 80 years of age has a form of dementia

The point of the research was to be able to enter the Design Council ‘Living Well With Dementia’ challenge – something I did with a team of multidisciplinary designers to help make caring for someone with dementia a more manageable and collaborative experience.

The best way I could gain a deeper understanding of what it can be like to care for someone with dementia was to speak to as many people as possible, do as much desk research as I could, visit care homes, remember visits to my great grandmother as a child and read, read, read.

It was recommended I read the book ‘Keeper – a book about memory, identity, isolation, wordsworth and cake’ by Andrea Gillies. It was sad in parts. Really sad. But fun and enlightening in others. Gillies writes about a lady who cares for her mother in law (and father in law) who is suffering with dementia. They move to a Scottish village with the view to running a bed and breakfast in the country side while caring for her husband’s parents (and running her family). The lady struggles, gets frustrated, feels isolated, tries different tactics, looks for help and questions her actions a great deal. I highly recommend anyone to read the book – it’s incredibly well written. The book is very insightful and helps someone, like me, who hasn’t cared for someone with dementia to start to understand what a challenging and personal experience it is.

The following points are what I have learnt about living with dementia over the last three months. I am nowhere near an expert but have learnt a great deal.

Living with dementia is about:

  • understanding the patient
  • being prepared for changeability and feeling like a stranger
  • living with guilt, longevity and unpredictability

When someone is diagnosed with dementia, they may have the ‘classic’ signs of losing their memory and getting confused but it is clear that every patient is different. It can also take months if not years to get a straight diagnosis. It is also a disease that develops over a long period (anything from 2 years to 25 years) and while some people are able to look after themselves for a number of years, others require help early on. This makes planning for the future very difficult. If someone appears to be able to cope alone, planning for the future is a tough subject for a carer to bring up with the patient. It is essential that bank accounts, housing etc are thought about for when the patient begins to forget the essential elements to everyday life. Keeping a journal is recommended to remind the patient (and carer) of events and key dates in the future and finding ways to jog the memory to remember comforting scenarios is often beneficial.

Carers have noticed sufferers have changes in mood; aggression leading on from frustration and anger towards the carer when the patient is confused as to who they are. It is very sad to hear stories of carers being seen as intruders and often being accused of stealing from the patient. People diagnosed as having dementia have good and bad days. The people living around the patient need to be aware of these and not take the mood swings personally even if this is easier said than done! Keeper describes situations where the patient is very affectionate to her grandson one minute and then accuses him of being a nasty little boy the next.

People with dementia often have moments of clarity which can help them deal with a situation or confuse them even more. What should a carer believe or put down to the disease? I have read many accounts where a carer isn’t sure how to deal with a situation. They do not understand how the patient is feeling and in turn feel guilty that they do not understand the disease better. There are plenty of sources of information online, forums to join and organisations set up to help people living with dementia but it is very much a personal journey that a carer and patient go through. Dementia can leave a carer feeling very isolated.

The more I learn about dementia, the more I keep relating it to babies and toddlers – expect in reverse years. A baby needs full time care and support from feeding to sleeping and a toddler understands some things but still needs full time care. A patient with dementia will go from understanding most things to needing help brushing their teeth towards the end of the illness. This can be a painful experience for people close to the patient which is where a carer who is not related to the patient often finds caring easier. Non-related carers are able to treat the patient as they are and not get emotionally involved. They don’t feel the need to justify actions or reason with situations.

I have heard a number of accounts where families have tried to keep the patient in their own home for as long as possible. Moving a dementia patient into a care home is a good decision to make sure they are looked after properly but can be very disorienting for the patient. Unsettling the patient is not only hard for them but hard for the family to witness. The patient is more likely to remember past stories from their earlier life than recent stories and because of that, keeping the patient in their familiar surroundings can help trigger the memory. Research is currently being done into creating environments that trigger a time in their lives that was most influential to them. The aim is to give the patients a sense of place.

To sum up my learning’s:

  • it is obvious that no one patient is the same
  • families find it incredibly hard to care for a loved one and see their health deteriorate (especially as there is no cure),
  • planning for the future is essential but difficult to do successfully and
  • carers find it hard to make time for themselves when the disease is in its later stages.
  • When no one patient is the same it’s hard to know what to expect.
  • When caring for a loved one becomes hard the carer is prone to stress.
  • When planning for the future is difficult, the carer needs a simple way to make this possible.
  • When a carer is finding it hard to make time for themselves they can feel very isolated or guilty.

The good news is that the National Dementia Strategy has been developed to provide a framework to deliver quality improvements, provide advice, planning and guidance. And the Design Council and Department of Health ‘Living Well with Dementia’ challenge is a fantastic example of encouraging designers to be creative in helping to improve the situation.

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