Blog – Coping with distress: the strength of caregivers

Although we know that nearly half of the population in Gaza are children, in light of the ongoing distressing scenes that we are all witnessing in the region and indeed in other war-torn parts of the world alike, I can’t help but find myself thinking of people that are dealing with pre-existing health conditions while simultaneously being subjected to violence – including those living with dementia.

As well as impacting a person’s cognitive abilities, the progressive nature of dementia can affect the way that someone reacts, understands, and behaves. This is particularly true for those living with dementia with Lewy bodies (DLB). DLB is one of the most common types of dementia, but its presentation has some distinct features that differentiate it from the other dementia types (i.e., AD and VD). One of the key symptoms of DLB is its impact upon neuropsychiatric symptoms and indeed behaviour. These symptoms include mood changes such as anxiety and depression, vivid visual hallucinations whereby the individual may see objects or beings that aren’t actually present, delusions such as paranoia and disruptions to sleep, whereby one of the earliest symptoms of DLB can be REM sleep behaviour disorder. This is not to say that everyone with DLB will experience neuropsychiatric symptoms in this way, they are just at a higher risk of doing so.

People with dementia can, understandably, experience heightened distress, and there are a variety of ways that distress may show – from crying, pacing and fidgeting to becoming withdrawn or uncommunicative. There are a range of causes for such distress which may be more related to people living with dementia that may be non-verbal where they may struggle to communicate and are therefore unable to express. Other reasons include anxiety, fear and confusion. As outlined in the DementiaUK’s guidance for coping with distress (for a person living with dementia), “they might be trying to make sense of the world around them, and they might see things quite differently from you – for instance, they might not recognise the place they are in as their home, or they might believe someone is trying to harm them”. Although these are highlighted here as perceptions, what would be the case if these circumstances were indeed a reality?

It is well known that people living with dementia who have experienced past traumatic events may relive this trauma as their condition progresses, so I can’t imagine the difficulty for people with dementia that are living through adversity. Here, the role of informal caregivers becomes pivotal. Their unwavering support often significantly uplifts the quality of life for their dementia-affected loved ones.

DementiaUK’s advice notes three key stages to managing distress. This starts with trying to avoid or reduce distress in advance. Making attempts to maintain a daily routine is beneficial for the PlwD, as well as disseminating information in “easy to digest” doses. Trying to avoid triggers and pre-empting the person’s need can all serve to help minimise distress. However, if the distress has already occurred – there are a range of calming techniques that an informal carer may find useful to employ such as talking directly to the PlwD about what is upsetting them, listening to them carefully – while using soothing, steady tones of voice and maintaining eye contact. Looking for signs of unmet need and sitting beside the person, offering their hand or discussing old happy memories can all help with relieving distress. These methods sound simple, but they may help in creating a calmer and safer space. It’s also important to highlight that in some cases these methods may not work at all, and if it is safe and appropriate to do so – providing the PlwD with space may offer the best outcome. Which leads on to the final pointer highlighted by DementiaUK; it’s important that the informal carer too practices calming techniques for themselves. It can be overwhelming for informal carers, particularly family and friends, seeing their loved-one experience distress. In an environment continuously strung with tension, like Gaza, the weight of witnessing a loved one’s distress while also experiencing external adversities no doubt amplifies the emotional toll upon caregivers, further highlighting the importance of their own well-being and resilience.

In the narratives of political unrest and ongoing trauma, people living with dementia can often go overlooked, yet they represent some of society’s most vulnerable. Amidst these adversities, the commendable resilience and dedication of caregivers shines even brighter. In typical settings, caregiver’s contributions are already extraordinary; under intensified conditions, their unwavering commitment is nothing short of heroic.

Hannah Hussain

Author

Hannah Hussain is a PhD Student in Health Economics at The University of Sheffield. As a proud third generation  migrant and British-Asian, her career path has been linear and ever evolving, originally qualifying as a Pharmacist in Nottingham, then Health Economics in Birmingham. Her studies have opened a world into Psychology, Mental Health and other areas of health, and with that and personal influences she found her passion for dementia.

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