A personal journey with dementia

20-05-2021

As part of our Dementia Friends Charity Week, we talk to our IQIP's Lead, Philippa Harwood-Little, about her journey with her mother, who was diagnosed with dementia and sadly passed away in 2018.

Phillipa is an extraordinary lady who has worked for OutsideClinic for 12 years in various roles. As a qualified Dispensing Optician, she started with us as the National Delivery Team Manager, and she and her team committed to developing a very high-quality delivery service.

Due to her mother's care needs, Philippa changed her role to a more supportive part of the team to focus on her mother's needs. Now, she is our IQIPS (Improving Quality in Physiological diagnostic Services) lead. She has helped us become the UK's leading provider of dual sensory services.

She also creates and implements many different training sessions for our staff, one of which aims to help them communicate more effectively with customers who have dementia. As a company that cares greatly about our patients, we want to ensure that everyone receives a high-quality service.


The SPECAL method

Philippa is beginning to train all our staff on a unique, practical and effective method of communication called SPECAL, which she used with her mother. This method is based on an innovative way of understanding dementia from the person's point of view with the condition and has recently been evaluated by King’s College London as a very positive form of communication.

"Knowing how to use the SPECAL method helps you understand what it feels like to have dementia, and once you can understand that, you realise that a common-sense approach to managing the condition is not useful at all. Once you have absorbed the general principles of the SPECAL method, you can then alter your behaviour and communication so that harmony comes into the home," said Philippa.

"As I got better at using the SPECAL method with my mum, it became more and more of a joy to look after her. It was an absolute joy at the end to look after somebody who was so much fun even though she had advanced dementia.

Philippa (right) and her mum Jo.

"She could be challenging at times, although she never hit out or showed any dramatic behaviour, but she could have done if her care team and I, hadn't been using the SPECAL method. It was pure luck for me that I found SPECAL. There are other methods out there, but I know this works, and it saved my sanity, too, at the time. I want everyone to know about it - not just our professionals visiting people with dementia but families and carers too," said Philippa.


It makes a difference

Having a team of opticians and hearing care specialists that truly understand how to communicate with people who have dementia makes such a difference. This, teamed with being in the customers home environment, means that the chances of completing a relaxed and thorough eye or hearing examination are very high.

"We are privileged to be invited into somebody's home – we can see their body language, and they can see ours, so if we are using clear messages with positive eye contact, slowing down, listening to them and not rushing them, that is much more effective," said Philippa.

"My mum used to love to have her eyes and hearing tested by OutsideClinic. She enjoyed having someone taking time and not rushing her in her own home environment. She was so much more relaxed in her surroundings. She got to 90 and was still hearing well and wearing lovely glasses and reading quite happily.

"From a carer's point of view, being able to go through the process of making an appointment, someone coming to the home, having their glasses and hearing aids fitted and hearing how thrilled your loved one is that they can hear the birds again is wonderful. It's that experience that keeps me wanting to train others how to communicate effectively with people who have dementia, and it keeps the company growing because we all have that passion – to help people who can’t get to the High Street."


Personal experience

Philippa has such a passion for teaching people and helping people to understand how to communicate with people living with dementia.

"I knew I had empathy for older people and people with dementia. I've been in optics for so long that I have met all sorts of customers, but when you see it in your own family, you do gain empathy, and you have to accept that there are some aspects of dementia that are going to be difficult to manage. I probably wouldn't have got into the 'dementia world' so strongly if I hadn't had the personal experience," said Phillipa.

"When mum was diagnosed in 2013, I read and read everything I could, I went on the internet to find something more positive, and I struggled. I found lots of practical advice but nothing about how to communicate. I eventually found Penny Garner, who is the Clinical Director and founder of The Contended Dementia Trust and has been responsible for developing and refining the SPECAL method. I became a coach with her, which is how I can now introduce the SPECAL process to OutsideClinic.

"It's all about promoting wellbeing for someone with dementia 24 hours a day, every day for life, which is a massive goal. My mum did go to a care home for the last few months of her life because she needed two people to care for her, but it was a care home that understood the importance of listening to and learning from the expert, the person with dementia, which is one of the general principles of SPECAL. My mother felt the home was a place of transition until we could look after her again, and she loved it because it was a place for meeting people, and she did an excellent job of that. She lived up to the end of her life with joy and contentment. I was so lucky, and that was an expression that she would often use - 'we are so lucky to have each other' with a whopping big kiss on my cheek.

"I want to reassure people that it doesn't have to be as bad as how you might imagine. If you are committed to caring for someone with dementia, it's very rewarding. We had a challenging relationship for years, but things changed because we became equal in this journey. And it wasn't all due to me; it was a lot of her determination, strength and character that kept us both going."