Stress Awareness Month: How do we reach beyond the Echo Chamber of good advice?

It is Stress Awareness Month and how do we reach beyond the Echo Chamber of good advice to those among us who are caring for somebody living with dementia…

Our ask of you this month is to reach out to someone who is caring for someone with dementia and really listen to them. The Dementia Trust team want you to take a moment to reach out to a carer who is caring for someone with dementia.

Our lives are short and three out of five of us spend time in a significant caring role for someone else and more specifically it is increasingly likely that most of us at some point in our lives will be living with dementia. In other words, we may have it or be caring for someone with it or both. Staggeringly, according to Alzheimer’s Society, Alzheimer's Society (alzheimers.org.uk) 1 in 3 people born in the UK today will be diagnosed with dementia in their lifetime.

Our ask of you this month is to reach out to someone who is caring for someone with dementia and really listen to them.
— Sonia Mangan (Trust Advisor)

April marks Stress Awareness Month, a time to reflect on the challenges many individuals face in managing stress and its impact on our daily lives. For those caring for someone with dementia, this awareness takes on a profound significance. Being a carer for someone with dementia brings unique and intense stressors, that can be overlooked by friends, family, work colleagues, or even those who are in care and health professions.

 It is not just the time when our knees crumple or our stomach drops it is the continuous feelings of anxiety, racing thoughts, anger, depression, lack of appetite, or doing things to excess, like scoffing a whole packet of hobnobs (other biscuit brands are available), sleeplessness, crying often, or never being able to shed a tear, and overwhelming fatigue, one daughter of her 84 year mother with Alzheimer’s as being “bone tired”.

In this blog, we delve into the world of dementia caregiving during Stress Awareness Month, shedding light on the realities, the emotional toll, and the importance of self-care.

Check in with the reality for someone who is a carer.

Caring for someone with dementia is a demanding and emotionally complex role.  It can be described often as an emotional rollercoaster, as a kid I found the Big Dipper in Blackpool, thrilling and terrifying.  I have not heard “thrilling” being used often by carers, walking through treacle, or trying to navigate over a particularly muddy field where halfway across one just wants to lie down, are usually more descriptive.

The word Dementia, describes a cluster of symptoms from a progressive neurological condition affecting memory, thinking, and behaviour, not only impacts the individual diagnosed but also reshapes the lives of those around us. The challenge for everyone is that the presentation of any of the conditions can be different for everyone.

However, one of the most challenging aspects for the carer is witnessing and living with the decline of someone’s cognitive abilities. It's a journey filled with emotional highs and lows—moments of connection and joy juxtaposed with the sadness of losing parts of who they once were. The carer can often feel stuck in the other person’s journey.

And it can be a lonely place: Many carers find themselves withdrawing from friends and hobbies as their focus narrows to the needs of someone else.

The Charity, Mind, Managing stress and building resilience - tips - Mind, identify loneliness as one of our barriers to identifying mechanisms for self-care and building resilience, alongside being carer, financial stress and poverty and living in area of poor access to services like healthcare. Sadly, for many carers these barriers are all too common.

What is the impact of being carers for someone with dementia?

Stress is an ever-present companion for carers of people with dementia. The emotional strain, coupled with the physical demands of caregiving, can take a serious toll on mental and physical health.

Carers themselves report on the impact of caring on their physical and mental health and stress is a common issue State of Caring Survey 2023 - The impact of caring on: health | Carers UK.  Carers of individuals with dementia have higher rates of depression, anxiety, and other health issues. The chronic stress of being a carer can weaken the immune system and increase the risk of cardiovascular problems.

There is a risk of Burnout. The relentless nature of being a carer without adequate support can lead to exhaustion, resentment, and a sense of hopelessness.

Despite the great news that carers are now entitled to up to five days carers leave from their employers Right to Carer's Leave | Carers UK carers will continue to reduce their work hours or leave their jobs entirely to provide full-time care, leading to financial strain and uncertainty about the future.

How can you help another recognise the Importance of Self-Care?

Amidst these challenges, self-care becomes not just a luxury but a necessity for carers. Recognising and addressing stress is essential for maintaining the well-being of both the carer and the person with dementia. We need to have each other’s backs, ask the questions, be kind to each other and really listen.

If we are a carer, we should not hesitate to seek support from friends, family, or support groups. Connecting with others who understand the challenges can provide invaluable emotional support and practical advice. There really some great organisations out there that can connect you to information, advice, guidance, other people in your situation, grants and/or support from your local council for respite, benefits support and help with navigating the complexities of the systems. Home - Carers Trust just put your postcode in to find your local carers organisation.

#LittleByLittle

In the second of our April Blogs (published next week), we talk about what a carer can do to support themselves. Our Ask of you our reader is to reach out to someone who is caring and help them to focus on themselves by seeking support; taking a break, setting some health boundaries, seeking professional support like counselling, or joining a carers support group. 

Educate yourself and others on what is like to be a carer, to live through the spin cycle of feeling useful one moment and like an unwelcome guest at another. Support someone to celebrate the small victories and moments of joy in being a carer.

In Conclusion

Stress Awareness Month invites us to acknowledge and address the stressors we face in our lives, particularly those that often go unnoticed. For carers of people with dementia, this month serves as a reminder of the importance of self-care and support. By raising awareness and fostering compassion, we can create a more supportive environment for those navigating the complexities of dementia caregiving.

Let's use this month to extend our gratitude to dementia carers everywhere and to advocate for the resources and support they need. Together, we can work towards a world where caregivers feel seen, heard, and empowered on their journey of caring for loved ones with dementia.

If you are interested in supporting the work of the Dementia Trust, visit our website and press the donate button. We support good people to do good things, better by providing them with grants to try out something new, and innovative through our Disruption Awards programme  Rare Dementia Support | Re-defining Expertise in Rare Dementia | Dementia Trust Disruption Awards.

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Top 10 Tips for Carers for people with dementia: Practising Self-Care to Manage Stress

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Dementia Trust: Annual Review 2023