In the first instalment of this 3 part blog-series, we took a look at what dementia is and the devastating symptoms of it. Now we will be taking a brief look at the effects that the dementia diagnosis has on the caregiver. The informal caregiver may be a spouse, a child, a sibling or any other person who is heavily involved and is a primary caregiver for the person with dementia. 

Challenges of the Caregiver

Caregivers often go through a multitude of challenges and difficulties, which may be considered as heavy by many. The truth is, the heaviness of these challenges centres around the foundations of love. You love the person with dementia, you want to give them your all, your care, your best, in an attempt to shower them with love. Afterall, the changes that the person with dementia goes through, is not really their fault. That in essence, is what makes living with this disease so challenging. 

Potential Burnout

As a caregiver, you may try your best, but often find yourselves encountering ever-changing personality and behaviour. These constant changes may become tiring, may become burdensome, and so may lead to what we know as caregiver burnout. Gerain & Zech (2019) express the understanding that informal caregiver burnout is a consequence of continued stress on the caregiver, and this is especially true when considering dementia. As discussed in the first part, dementia is a progressive disease, which means it is continuously deteriorating, and thus this puts significant stress on the caregiver, which may in turn lead to burnout. 

So, what can we, as caregivers, do to help ease the stress?

Primarily, always keep in mind your communication tactics with the person with dementia. Simple strategies include trying to set a positive mood for the conversation, being clear and concise in the way you deliver your message, asking short and simple questions (often involving yes or no answers), as well as limiting distractions when talking to the person with dementia (such as switching off the tv). These are all simple steps that can help mitigate the changing behaviours and mood swings. Additionally, always keep in mind that you may have to redirect the conversation.

If you recognise that the person with dementia is suddenly feeling agitated or stressed, then don’t worry. Do not try and force the conversation, even if you may need an urgent response. Redirect, change topics, allow the person with dementia a space to breathe, then after a while, try again. Do not push through when you’re seeing no way in. 

Take Care of Yourself

Finally, as a caregiver, always remember that you have your life too. Do not feel guilty if you feel like going for a coffee with your friends, or going for a stroll by the seaside. You need your quiet time too, you need to rest and recharge. Always remember, to take care of others, you have to take care of yourself first. Whilst we will be discussing the effects of dementia on the person living with it in the third part, I would just like to give a huge shout out to all the informal caregivers out there. Keep going, you are making an amazing sacrifice. Thank you. 

If you think that you can benefit from professional support on this issue you can reach out here.

Mr Teebi works as a Clinical Psychology Practitioner at Willingness, and works with clients with complex issues, including depression, anxiety, trauma, chronic pain, grief and cognitive impairment. Mr Teebi has graduated from the following degrees with Merit: Bachelor of Psychology (Hons), a Master of Gerontology and Geriatrics , and a Master of Psychology in Clinical Psychology, all at the University of Malta. He is currently reading for a PhD in Clinical Psychology and Geriatrics at the University of Birmingham.

ReferencesGérain, P., & Zech, E. (2019). Informal Caregiver Burnout? Development of a Theoretical Framework to Understand the Impact of Caregiving. Frontiers in psychology, 10, 1748.