The impact of dementia on family members & carers

Navigating the journey of dementia can be difficult. According to the impact of dementia on informal care study, caring for a relative with dementia greatly impacted family members’/partners’ emotional health, with most feeling sad, worried, and frustrated. These findings are consistent with another UK study in which 82% of carers reported medium (64%) to high (18%) levels of anticipatory grief, while 79.5% reported caring for their relative with dementia had adverse effects on family relationships.

This highlights why we need to have effective strategies in place to make it easier to manage our everyday lives when we are looking after a loved one with dementia. We’ll explore the impact of dementia on caregivers and family members and the steps you can take.

 

Emotional and physical impact of dementia on families

There's no doubt that there’s adverse effects of dementia on family members almost every day. Most aspects of their life will be affected. It can take a strain on a family member's time, carers, fitness and their own health.

Dealing with the impact of dementia on spouse

It’s inevitable for relationship dynamics to change, with a spouse relationship being impacted the most. As a person's cognitive ability declines, connecting with your partner can become more complex. It’s likely that you’ll experience changes in intimacy – the social effects of dementia mean people won't be able to express themselves as well as before the dementia.

It can be disheartening and feel isolating and stressful, as you won't experience the same sort of connection. Spouses who take the caregiving role can experience a range of emotions, such as sadness, due to witnessing unusual behaviours, such as a person asking repetitive questions or having angry outbursts.

Dementia impacts children and teenagers

Children and teenagers may see changes in a person with dementia, but may not fully understand what is happening. Their emotions may vary from adults, especially as the emotional part of their brains and the decision-making centre are still developing, leading to overwhelming emotional input. It can cause them to be anxious or embarrassed; they feel judged or labelled at school if their relative behaves unusually around them. They can also become bored when the person with dementia struggles to communicate, e.g. having gaps in their speech or forgetting words.

Strategies for families coping with dementia

No matter what kind of caregiver you are, caregiving or coming to terms that a loved one has dementia can be a stressful time. Here are some strategies to help you cope better:

• Seeking emotional support from dementia care communities. These can include formal or informal support, one-to-one or group-setting support. Places where you can express yourself without fear of judgement and share and connect with others in similar situations.
• Practising self-care. It can be easy to neglect your needs and prioritise your loved one instead. Make sure you are carving out time for yourself so you can optimise your wellbeing and prevent burnout.
• Maintaining positive relationships. Take time investing in your relationships and maintaining regular contact. Having social connections in your life can make your everyday life more enjoyable, and they are places where you can express your emotions and receive support.

 

The burden of dementia on carers

The impact of dementia on carers can be felt just as much too. Primary carers of people with dementia are more likely to report moderate or high carer burden. Around 3 in 4 primary carers of people with dementia (75%) reported they had 1 or more physical or emotional effects due to the caring role. Being a caregiver is challenging, because you aren’t able to predict what will happen on a given day, and you have to be highly adaptable and deal with difficult situations.

That’s why it's important that you are able to craft time out for yourself, and make sure you are investing in yourself too. Support systems can be a lifesaver when you need a break, extra support, or when you need to offload. Still carrying out your caregiver duties while you're experiencing burnout can be ineffective.

 

Financial impact of dementia on families

When a loved one has dementia, it can be costly. If a family member takes on the role of a caregiver, it is likely they will have to give up their job or reduce their working hours to spend more time looking after their loved one. Another route that families may go down is moving their loved one to a care home, which again can be costly. They may have to use their parents' savings or use their own savings.

 

Family involvement in dementia care: A key to support

If you are considering moving a loved one to a care home, it's key to get involved in their dementia care to support them in leading meaningful lives. There will be lots of decision-making in the process, and it's best to answer as accurately as possible or things you know your loved one prefers or requires in their day-to-day life.

Even though a care home will be providing emotional support, it’s still advised to check in with your loved one to see how they are doing emotionally and keep note if they have any concerns about their care. This makes them feel less alone and that they still have a support network outside the care home. In addition, engaging in care activities with loved ones inside can have many positive effects on their wellbeing.

 

Resources and support for navigating dementia care

We’ve put together a list of resources and support for navigating dementia care:

• Advice Line: Offers advice on a range of topics, including dementia care. Reach them at 0800 055 6112.
• Dementia carers support guide
• Admiral Nurse Dementia Helpline: Provides advice for families living with dementia. Call them on 0800 888 6678.
• Guides and Factsheets: Charities such as Alzheimer’s Society, Dementia UK, and Age UK provide detailed guides and factsheets covering various aspects of dementia care

 

Barchester care homes: Specialised dementia care services

For more than 30 years, we’ve been a provider of choice for specialised dementia care services. We provide dementia care to support your loved ones with dementia to lead meaningful lives. You can have peace of mind knowing that your loved one is in safe hands with 24hour care, anchored in a personalised care and support plan, ensuring each person can retain their joy, independence and life skills for as long as possible. Family and friends are supported throughout too, and we encourage you to take an active part in your loved one's care.

If you’re considering a break or going on holiday, we offer respite services where your loved one can stay with us for a short term too. 

Find a Barchester dementia care home near you

Looking for your nearest Barchester dementia care home? Find it here using our care home search tool.