Misconceptions about caring for someone with Alzheimer’s

As we enter this year’s World Alzheimer’s Month 2023, new research from Lottie has revealed the biggest misconceptions about caring for someone with Alzheimer’s. Stereotypes and myths can have harmful effects on both those living with this condition and their caregivers, including communication barriers, isolation, and increased stress.

Online searches have surged for support groups over the last 12 months across the UK, with more people seeking online and in-person support for Alzheimer’s care too. More people than ever before are seeking help for those caring for Alzheimer’s:

• 400% increase in online searches for ‘Alzheimer’s carers’*
• 67% increase in online searches for ‘Alzheimer’s family support’
• 23% increase in online searches for ‘Alzheimer’s support’

Whilst searches have continued to surge for support groups, so have mental health worries and concerns from carers. Over the last 12 months, there has been a huge 875% increase* in online searches for ‘feeling trapped caring for elderly parent’ and a 300% increase* for ‘parent carer burnout’.

Hannah Karim, Care Expert Manager at Later Living Marketplace Lottie, shares, “As we enter this year’s World Alzheimer’s Month, it’s so important to dispel the biggest myths, stereotypes and misconceptions about living with Alzheimer’s and caring for those with this condition. Negative assumptions can lead to those with Alzheimer’s feeling diminished or isolated, impacting their self-esteem and sense of identity.

Incorrect beliefs about the capabilities of those with Alzheimer’s can be extremely harmful for their quality of life, too. They may limit their engagement in activities, create a communication barrier, and affect how they feel about themselves.

These stereotypes can also impact caregivers, too. They may experience increased stress levels, a greater emotional toll, and act as a barrier to seeking help for caregivers who are struggling.

As well as this, our latest research shows that we’re at a critical point for caregivers, with more carers than ever before turning to Google for support with their mental health and caregiving responsibilities”, concludes Karim.

Myth 1: If you have Alzheimer’s, you won’t remember anything

Although memory loss is a common symptom of Alzheimer’s, they can still remember events from their past and experience lots of moments of clarity and recognition.

However, if you’re caring for someone with Alzheimer’s, you should avoid asking them if they remember. Avoid saying ‘remember when…’ to jog their memory. Instead, you can talk more openly about the past and lead the conversation. A more suitable and calm approach would be ‘I remember when…’, as this can ease them into an open conversation where they can join in, if they feel comfortable.

Myth 2: It’s appropriate to describe those with Alzheimer’s as ‘suffering’

The way we communicate and talk about Alzheimer’s has a direct effect on how people living with this condition feel. Using phrases like ‘suffering from Alzheimer’s’ or ‘a victim of dementia’ is negative and can have a profound impact on the person with Alzheimer’s, as well as their loved ones.

Instead, use respectful language to show that Alzheimer’s isn’t a defining aspect in their life. For example, say ‘a person with Alzheimer’s’ or ‘living with dementia’.

Myth 3: You can’t engage in any fun or meaningful activities

Often, the best part of your loved one’s day is spending time with you. Although it can sometimes be a challenge and feel overwhelming, it’s so important to spend time together. Those feelings from relaxing and having fun together can shape the rest of their day. Your visits and quality time with your loved one have more lasting power than you think and can influence how they feel, and even how they eat.

From playing familiar music to exploring arts and crafts together, there’s something to try for everyone. Remember: even if it’s a slower pace than what you’re used to, you’re making memories together.

Myth 4: Caregiving for Alzheimer’s is all about them, not the carer

Caregivers play an invaluable role in looking after someone with Alzheimer’s, and it’s so important to recognise the incredible support they give everyday.

Caring for someone with Alzheimer’s can be very rewarding, but it may be challenging, too. It’s understandable to feel frustrated and even angry sometimes. For instance, you may feel overwhelmed, or things are happening outside of your control.

Watch out for signs you’re feeling frustrated; for instance, if you have a shortness of breath, chest pains or you’re experiencing a lack of patience. Take yourself away from the stressful situation and try some relaxation techniques, including mindfulness or head outdoors for a quick walk. Always be proud of yourself for how much support you’re giving to a loved one, too.

There are lots of support groups, both online and local to your area, including Care Space; a completely free, online care support group. A quick search online will pull local groups near to you, too.

Myth 5: You’ve got to talk differently to someone with Alzheimer’s

Although no harm is intended, sometimes you may find that you speak differently to your loved one who has Alzheimer’s. Speaking in a child-like tone can come across as patronising and demeaning and may leave your loved one feeling irritated, overwhelmed, or anxious.

Remember that your loved one deserves dignity and respect. Every person’s experience of Alzheimer’s is unique, so make sure they feel as comfortable as possible. Communicate clearly and calmly, use simple sentences, and take the time to listen to their response.