The first time I was confronted with dementia I was 25 years old and the mother of a friend was diagnosed with Pick’s disease, a form of frontotemporal dementia.
This form of dementia can affect people at a younger age (my friend's mum was 58) and is characterised through several symptoms but the one thing that stood out for me was the personality change and the impact that can have on relationships.
After a visit to my friend's mum, we were a bit in shock. We witnessed behaviour that was so NOT her, we heard language that we didn’t know she ever used in her life. My friend said she did not want to take her children to see their grandmother after this.
A staff member saw us and took the time to talk to us. Validating her feelings this staff member really supported my friend. She gave us information about the symptoms we can expect to see with her mum.
It was then that she gave us a small pamphlet with some tips for staff (she said she didn’t have a specific handout for family yet).
These are the tips handed to us.
Tips when caring for someone living with dementia:
- Treat your supported person with respect. Sound as something fundamental in caregiving but sometimes we can get caught up in our own emotional response to behaviour that we see.
- Focus on the abilities our supported person still has. As we know that remaining active is important for someone experiencing symptoms of dementia. We need to find a balance between doing for and letting them do themselves. Remain flexible and adapt your approach as needed.
- Think about your communication:
- Make sure you get their attention, before you talk
- Talk at a rate your supported person can understand
- Use short sentences
- A maximum of one question, message or task per sentence
- Talk about things that need to happen now
- Put the action to the word (‘shall we go for a walk?’’ and then do it)
- Be flexible and adjust your approach. If someone is responding to a hallucination or delusion it may not be appropriate to correct them. A way to acknowledge them is to focus on their feelings around this (“I can see ….”)
- Keep the day routine and avoid where possible changes. This provides clarity and guidance. But again, remain flexible.
- Don’t test your supported person (too much). Be mindful of how many questions you ask especially about their past. If they don’t know the answer it could be upsetting for them.
These tips have helped my friend and myself engaging with her mum, knowing when to respond and adjusting our approach has helped us still being able to connect with her.
My friend also made sure that when her kids visited their grandmother there was also someone with her that could attend to the kids if needed (also a tip from a staff member).
So, with the help of staff, my friend was continuing to visit her mum. On difficult days there was always a staff member willing to support her. Seeing the impact of this support on my friend and her family helped me to become a better care giver myself.
Find out more about our Dementia Capable Care training
, aimed at frontline staff.