Keywords

Our experiences show that we are so often not listened to, and assumptions are made about levels of understanding and capacity related to dementia. The person living with dementia and the carer can recognise signs some time before a diagnosis is given, whether it is cognitive decline, memory problems, sensory problems, or aphasia, which do not necessarily present themselves at initial assessments and memory testing. Once a person makes that initial contact for help, they should be listened to. We are the experts of our own experience. (Myra)

As our work together ended, co-authors considered three questions to summarise the key messages we wanted the reader to hold on to.

Question 1

If you met someone who had just been diagnosed with dementia, what would you most want them (or the person they are supported by) to know?

They are not on their own (we found that the Council Care Manager was our best support initially but was not sure if this is universal even in Scotland). (Stuart)

You have met one person with dementia; we are all different. (Martin)

I would reassure them and tell them to take it a day at a time, look after yourself, and look forwards to a long life. It might involve adjustments and there is support available in many forms to help you, take all the help you are offered. (Myra)

I would want to know what services are out there, including support groups and where family could also be welcomed. Professionals need to know that users and carers do not want professionals’ opinions to be forced upon them. We want a range of options. This can happen to any of us. More so for dementias with a genetic link. (Alyson)

This is difficult simply because there are so many different types and stages that people have gone through. I think everyone who is involved at the diagnostic stage should not simply be told, ‘you have X type dementia’ and handed a few leaflets. Depending on the severity and stage of the illness, the affected individual may or may not be capable of understanding any explanation or advice. It’s better that the carer is made more aware of the actual illness, what to expect, and what support is available. This should be a one-to-one session and take as long as it takes to ensure they are fully made aware of what to expect and how to prepare. The person with dementia, depending on their cognition, must also be made aware and not frightened by it. (David)

If I met someone who had just been diagnosed with dementia, I would most want them, or the person supporting them, to know just how much help is out there and give them information on how to access it. (Winnie)

Everybody’s journey is different, and what someone struggles with practically might be very different from what causes them distress, and that is ok. (Neil)

Question 2

What are some of the things that you have found most helpful in adjusting to living with or supporting someone with dementia?

There are many forms of support to help you live with dementia and care for someone with dementia. Initially, after diagnosis, you may just want time to adjust to a life-changing diagnosis and come to terms with a new way of living. Take every bit of help you are offered; it may seem overwhelming, and you just want to get on without any support, but the sooner you accept help, the better you will cope. (Myra)

Access to the internet, as living in a rural area, there is no peer-to-peer locally. (Martin)

We never used either of these examples, but in hindsight, Tena Lady pants and using disabled toilets when Eileen became incontinent would have saved us lots of stress if I had made use of them earlier (why I did not use them … mostly ignorance). (Stuart)

Some of the things I found most helpful in adjusting to living with dementia were first, a GPS tracker. There are various ones, but I used one by my service providers. Second, a walk-in shower made life much easier. The third thing I would mention was the service that changed my life as a carer. I would urge everyone to take advantage of any day care support that is on offer. (Winnie)

Learning what is important and what is not. Validation from others you are doing a good job. It is not always important for someone to recall details. It has taken 2 years due to COVID-19 but the wet room is invaluable. Especially if you have someone with incontinence. Appropriate resources are important. Consistent care, that is, a core group of carers providing care at the same time. (Alyson)

This depends on the condition and progression of the illness. I don’t think that anything worked to the extent that was noticeable; things like music and artificial aide all played a part. Because most of my experiences were through the pandemic/lockdown, the most important aspect was social interaction. The fact that people were isolated caused all sorts of problems, I suppose it highlights just how important social interaction is. (David)

We found that accessible versions of everyday things—larger clocks, specialised cutlery, that sort of thing—helped with the day to day, while support from social care professionals helped a lot with creating helpful routines. (Neil)

Question 3

If the readers of our book went away with one key message, what would you want them to remember most?

  1. I.

    People living with dementia

  2. II.

    Family members

  3. III.

    Professionals

  4. IV.

    Members of the public

Take us seriously, dementia is experienced differently by all who live with it. Listen to what we have to say and treat us as individuals, we are experts by our experience. (Myra)

We are all different, with differing abilities. (David)

Seeing a loved one through this stage can be rewarding if the circumstances are right for you to be a provider. It would be upsetting to me that I was unable to care for mum due to a lack of support or resources, rather than my threshold to care. (Alyson)

For People Living with Dementia

They should be loved and supported for who they are not what they have become. (David)

Change is inevitable but can be prepared for. (Neil)

For people who have just been diagnosed with dementia, although it is a massive diagnosis to get your head round, it is not necessarily the end of life as you know it. There are loads of positive stories out there and that is where your focus should lie. (Winnie)

Family Members

They should be made more aware of what dementia is and what it does to people and should be given much more support and advice. (David)

Treat your loved one with dementia as normally as possible. Try to keep their lives as stress free as possible. They can feel, lost, alone or a burden, so they need a lot of reassurance. (Winnie)

Being present is better than being educated, but both would be best. (Neil)

Professionals

They must understand that textbooks and medical experiments that have been going on for decades are not the only solutions to dealing with/curing dementia. They have to listen to people outside their own circles who have real-life lived experience and are able to observe what is going on 24 hr/day. (David)

It is more complicated than professionals often made out. Patients need time to ask questions and if the doctors, etc., don’t have the time, refer them to charities, etc., who do. (Stuart)

Listen to the people with dementia and their carers. They are the experts here because they are living with it 24/7. (Winnie)

The most specialised education in the world will not tell you about how an individual is coping, or what they are subjectively experiencing. That requires listening to the person, engaging with them and personalised care plans cannot happen without personal interaction. (Neil)

Members of the Public

Read the book then read it again, you might miss or misunderstand the first-time round. (David)

It is often a hidden complicated illness, especially in the early stages. Be patient. (Stuart)

People you know or meet with dementia are still the same people. If you met them limping along on crutches you would be likely to feel sympathetic towards them. You cannot see what is going on for a person with dementia, but they are wounded just as much. Their brain is not working the way it should. They are not stupid or crazy. They need your compassion and sometimes your help. (Winnie)

Dementia is a scary topic for everyone, and it is ok to be uncomfortable. It is scary for people with the diagnosis too, and it would be great if you could sit with your discomfort enough to walk with them, or at least engage with improving their care. (Neil)

The book has provided a platform for the voices of our Partners in Research. We hope that in sharing these experiences, people reading this book can feel represented and find information that can help them, whether personally or professionally. We hope that by sharing the spectrum of dementia research, people feel encouraged to get involved as participants and/or as co-researchers. Finally, we want to say thank you for reading and for taking the time to understand our experiences.

Get in Touch

Thank you for taking the time to read through our book. We hope that it has been helpful, and that you have enjoyed getting to know us.

If you are interested in hearing more about Partners in Research and the different work we do, please get in touch on TAY.ppipartners@nhs.scot. To hear more about clinical research in your area, please contact the NRS Neuroprogressive and Dementia Network on TAY.ndntayside@nhs.scot

Website: www.nhsresearchscotland.org.uk/research-areas/dementia and neurodegenerative disease

Telephone: 01382 423 086

Facebook: NRS Neuroprogressive and Dementia Network

Twitter: @NRS_NDN