Let’s talk about Dementia…

In their guest blog for us, Dementia Oxfordshire, discuss all things dementia, including the myths, the facts, and the practical support and advice that will help you following a dementia diagnosis.

A diagnosis of dementia not only impacts the individual with the diagnosis, but those close to them as well. Some can naturally jump to the negative stereotype of dementia and lose sight of what is actually happening in the here and now. Thoughts of someone wondering around not knowing who they are or what they are doing or who their family is can be very scary, but this is not what dementia is all about. There will still be time where the person is able to live well with the right support. It’s about focusing on what the person can do and the skills that remain with them.

Dementia’s impact on a person is very individualised, so although there may be a group of people with the same type of dementia who show similar signs and symptoms, the way that they respond to it and their experiences of it are very different.

‘When you have met one person with dementia, you have met one person with dementia’, Tom Kitwood.

It will be valuable to build a support network early on, so you know who you can call for different types of support. It’s a good opportunity to also build your knowledge on dementia and form your own ‘tool kit’. These will contain positive ways to interact/respond and redirect with someone living with dementia. It’s good to have a few tools in the kit as what may work one day, may not work the next!

Repetitive behaviour and Dementia: 

One of the main challenges we hear from family carers is dealing with behaviours that their cared for may present with. Behaviours such as being repetitive in conversation or activity.

When it comes to repetitive behaviours, it can be very frustrating to hear the same story or be asked the same question over and over again. Sometimes this can lead to outbursts of frustration followed by feelings of guilt – one thing to remember is you are only human! Outbursts will happen! All you can do is take a deep breath or take a time out and start over with a fresh new interaction. 

With repetitive questions, it is good to respond to the question as if it’s been asked for the first time. Alerting the person to the fact that they are being repetitive may lead to a negative atmosphere. It may be that they have simply forgotten that they have asked the question, or it may be that the questions are them trying to communicate a need.

If they have something playing on their mind and worry that they may forget something important, this can lead to repetitive behaviours e.g. if they are due to go to an appointment, they may be fearful of forgetting about it or worried about the appointment in general, so it plays on their mind and ask, ‘when is the appointment?’ or ‘what time is the appointment?’ repeatedly.

The underlying need here is reassurance – reassurance that they will not miss their appointment and that they will be supported. Sometimes re-directing them on to another topic of conversation or to an activity to help distract them from their current thought process can help in reducing their repetitiveness. 

It’s good to remember that behind some behaviours is someone trying to communicate with you. This may be related to an unmet need. Are they repeating themselves because they feel anxious? Maybe they want to tell you something, but can’t find the right words.

The most important thing when caring for someone with dementia is looking after yourself! Take respite opportunities – continue to meet with friends – anything you need to do to help maintain your own wellbeing is vital.

Below are some links to websites that talk about repetitive behaviours and lots more:

Repetitive behaviour and dementia | Alzheimer’s Society (alzheimers.org.uk)

Repetition in people with dementia – SCIE

Understanding changes in behaviour – Dementia UK

If you care for someone living with dementia who is registered with an Oxfordshire GP Surgery and they aren’t registered with Dementia Oxfordshire, do get in contact for further support:

Dementia Oxfordshire – Connect. Inform. Support.

Support Line: 01865 410210 open Mon-Fri 9am-5pm (excluding Bank Holidays)