Caring for someone with dementia can be challenging. It may not feel as though you’re a carer, particularly if the person you’re looking after is a partner, relative, or close friend. But it’s important to recognise the role that you’ve taken on. Due to the progressive nature of dementia, it’s also key that everyone involved has access to the right support to help them cope with symptoms and unexpected changes in behaviour.

From accepting diagnosis, to taking breaks from care and choosing the right care home, below we’ll cover some common challenges faced by those caring for someone with dementia, and offer tips on how to handle them.

1. They won’t accept their dementia diagnosis

It can be incredibly difficult if the person that you’re caring for won’t acknowledge their dementia diagnosis. Some people might put memory issues and other behaviour changes down to simply getting older. Others may get emotional, or immediately change the subject if you try to bring their condition up in conversation. This denial can make it especially tough to guide them towards seeking support and help.

If this sounds familiar, then it’s worth taking a moment to consider what might motivate the person to accept their condition and get help. For example, could they be worrying that acceptance of their condition would instantly mean moving into a care home and losing independence? If so, then it might be helpful to explain that full-time care isn’t always immediately necessary. It’s also important to reassure them that you’re there to support them. Losing your memory and thinking skills is a scary concept, so having the support of loved ones can help to remind them that they’re not alone.

2. The person’s behaviour changes

One of the most difficult aspects of dementia is often when patients experience behaviour changes that are hard for others to understand. Examples include aggressive behaviour, feeling confused about their surroundings, and regularly leaving home. These changes can be challenging and upsetting for both the person with dementia, and for the person or people caring for them.

Firstly, it can be useful to work out if there are any particular triggers for behaviours. For instance, do they occur at similar times in the day? Is the person’s living space clean and calm, or cluttered and noisy? Do the changes happen when they’re asked to do something they don’t want to? Keeping a diary over one or two weeks can be a useful way to identify these triggers and help you feel more prepared for certain behaviours.

Maintaining an active social life, exercising regularly, and continuing activities that the person enjoys – for example, spending time with grandchildren – can also help to reduce behavioural changes. You can read more about activities that are good for helping to manage dementia symptoms on the NHS website. Other things that can help include creating a quiet, relaxing environment, reassurance, and therapies like animal-assisted therapy, and music therapy.

It can be challenging caring for a person with behaviour changes. If you’re struggling to cope, it’s worth making an appointment with your local GP, who can offer you support.

3. You need a break from caring

Every carer will need to take breaks to look after their own health and wellbeing. This time off to recharge and relax is generally known as respite care. Respite care can cause anxiety for some carers; some may worry about finding replacement care or even feel guilty for temporarily leaving their caring duties, especially if they’re looking after a loved one. However, it’s important to prioritise your own health just as much as the person’s that you’re caring for. After all, you’ll only be able to offer the best care when you’re in good form both mentally and physically.

Luckily, there are plenty of respite care options. Examples include day care centres, homecare from a paid carer, help from family and friends, and short stays in a care home to allow you to go on holiday. You can find more information on what local support is available through your local council and local carers’ centre or respite service. The NHS website also has useful guidance on different types of respite care, the cost of services, and how to arrange it.

It’s also worth having backup arrangements in place too, in the event that emergency respite care is required. For example, if you couldn’t reach the person needing care in the event of sudden illness or accident. This could mean asking another relative, a friend, or a neighbour if they’d be prepared to take over for a few hours if needed. In said case, it’s worth making sure they’d have access to a set of keys and know the care needs of the person. For example, you could make a list of essential information such as medications, and any dos or don’ts that they should be aware of.

4. The person’s care needs change

People with dementia will often require extra support with daily life as their condition progresses. Changes to brain function and reactive times can result in symptoms such as incontinence. This can be down to communication issues, mobility problems, not recognising the bathroom, and/or being unable to make it to the bathroom in time. This loss of independence can often leave patients feeling embarrassed, and even depressed.

Managing these changes as a caregiver can be tricky. Sometimes people are prescribed medication to calm an overactive bladder, or advised to limit liquids before bed, wear pads and pull-up pants, and avoid spicy or acidic foods that can irritate the urinary tract.

As the caregiver you can also take steps to reduce the risk of accidents. For example, by removing obstacles from paths to the toilet, leaving the bathroom door open at all times, and bringing spare clothes and planning travel stops if going out. For more ideas on how to limit accidents and reduce their emotional impact, head over to the Healthline website. Nevertheless, it’s always best to speak with a doctor before implementing any changes as they will be able to advise you on the best methods based on your individual circumstances.

Other changes in dementia progression can include aggression and anger, anxiety and agitation, wandering, hallucinations, and sundowning. You can read more about these changes and how to manage them on the Alzheimer’s Association website.

5. Making the decision to move into a care home

Since dementia is a progressive condition, people often require more care and support as their symptoms worsen. In some cases, this might mean moving into a care home that can better accommodate their needs. If you’ve been helping someone living with dementia or are their carer, this can be a hard decision to make. However, it’s worth keeping in mind that there can be many positive aspects of moving to a care home too. For example, the 24-hour support from carers, social activities with other residents, and assurance of the person’s safety. 

Sometimes the person with dementia can make the decision themselves. However, it’s possible that they’ll be unable to decide for themselves. If you or someone else involved in the care has a lasting power of attorney, then you can make the decision on behalf of the person with dementia – as long as it’s in their best interests. Nevertheless, it’s important to try and speak with them about their preferences, even if they are unable to make the decision themselves.

If you’re feeling whether a care home is best for the person you’re caring for, then there are a few common signs which can signal it’s the right decision. Below are a few examples:

  • The person tends to leave home by themselves and has trouble finding their way back.

  • The person has worsening sleeping problems, including broken sleep and disorientation throughout the night.

  • Fears over the person with dementia’s safety and/or the safety of those around them.

  • A breakdown in support surrounding at-home arrangements.

  • The person being cared for is experiencing Incontinence and/or indifference to personal care such as dressing and washing.

6. Choosing the right care home

If you decide that the person you’re caring for would benefit from living in a care home, then there are two types to choose from:residential and nursing. Both provide personal care and should have staff trained in dementia care, however nursing homes also offer 24-hour care from qualified nurses. There are also specialist dementia care homes which provide care for people with complex needs relating to their condition.

Every care home, even of the same type, will be different, so research and preparation is important to ensure that your loved one receives the best quality care. One of the most important things to check when deciding on a care home is the most recent Care Quality Commission (CQC) report. The CQC regulates all care homes in England and provides inspection reports which detail each care home’s services, including any areas of concern.

Other things to think about include location, facilities, staff, and other residents. For example, are all the staff trained in dementia care? How are residents treated? And is there a garden for residents to walk in safely? Often, the best way to get a feel for a care home is to go and visit it. For more information on what to consider when choosing a care home for dementia, you can visit the NHS website.

Who pays for care and how much will depend on individual circumstances. Some people will be entitled to local council funding, while others will have to pay for care themselves. You’ll find information on care funding (including how to seek help through your local authority) in our article How to pay for long-term care.

Final thoughts…

Caring for someone with dementia can be challenging, stressful, and at times, emotional. Due to the disease’s progressive nature, it can help to be prepared for changes in the person’s behaviour and care needs. For example, considering how to bring up the topic of care while remaining sensitive to the person’s feelings, having arrangements in place for respite care, and plans for funding long-term care. This can help to make it as smooth a process as possible for both of you.

Remember, it’s just as important to prioritise your own health and wellbeing as that of the person you’re caring for. This means taking regular breaks, doing things that make you happy, and leaning on support from others where necessary. You can read more about balancing your life as a carer in our article 8 ways to look after yourself when caring for an elderly relative.

Have you had experience caring for someone with dementia? We’d be interested to hear from you. You can join the conversation on the Rest Less community forum, or leave a comment below.

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