Your guide to caring for a parent with dementia at home

Caring for a parent with dementia at home can be overwhelming. As you prepare for the journey ahead of you, it is important to arm yourself with as much information as possible. We also recommend getting all the advice and support that you can, to benefit both you and your parent.

Within our guide to caring for a parent with dementia at home, we’ve looked at:

• The different stages of dementia
• Tips to help with caring for a parent with dementia at home
• Care and support available through the Scottish Nursing Guild

The different stages of dementia

Each person’s experience of dementia is unique in terms of their symptoms and the speed of its progression. An early diagnosis can help you plan future care, and, in some cases, medication may help slow its progression.

There are three stages of dementia – early (mild), mid-stage (moderate) and late-stage (severe). This can mean that as your parent’s dementia progresses, they become increasingly dependent on you or an in-home care provider.

Early-stage dementia

In the early stages of dementia, symptoms may be mild. Your parent may have problems recalling a new name, following directions, or remembering where they have left certain items. However, at this stage, they may still be able to live independently and even drive.

They’ll likely need to be supported by family and carers who regularly check they’re safe, well nourished, and taking medication. Some people carry on with their everyday activities while wearing a fall alarm on a neck cord or wrist strap.

The different stages of dementia

Each person’s experience of dementia is unique in terms of their symptoms and the speed of its progression. An early diagnosis can help you plan future care, and, in some cases, medication may help slow its progression.

There are three stages of dementia – early (mild), mid-stage (moderate) and late-stage (severe). This can mean that as your parent’s dementia progresses, they become increasingly dependent on you or an in-home care provider.

Early-stage dementia

In the early stages of dementia, symptoms may be mild. Your parent may have problems recalling a new name, following directions, or remembering where they have left certain items. However, at this stage, they may still be able to live independently and even drive.

They’ll likely need to be supported by family and carers who regularly check they’re safe, well nourished, and taking medication. Some people carry on with their everyday activities while wearing a fall alarm on a neck cord or wrist strap.

At this stage, you may want to think about:

• Discussing your parent’s future wishes with them. Do they want to stay at home or look into care facilities?
• Getting a lasting power of attorney. This allows you to make financial and medical decisions when your parent no longer has the capacity to do so
• Investigating the Message in a Bottle Scheme run by the NHS in partnership with the Lion’s Club International. This is where people store personal and medical information in a container in their fridge so it’s easily accessible to the emergency services. It can also contain information about their medical wishes. This may include whether they want to go to hospital and directions such as a Do Not Resuscitate (DNR) form

Mid-stage dementia

As dementia progresses to the mid-stage, it’s likely your parent will face new challenges. They may feel increasingly disorientated or confused. They may also have difficulty recalling faces or names and lose some mobility, making it more likely they will fall.

At this stage, most families start to research long-term care options, which can include hourly or live-in care. This ensures your parent isn’t left alone for long periods of time.

At this stage, you may start to see the following:

• Emotional changes, where your parent feels angry and frustrated, depressed, or anxious
• Communication issues, as they struggle to remember certain words or find that words come out in the wrong order
• Their regular sleep pattern becomes affected, so they’re more wakeful at night and sleepier during the day
• They wander and become lost
• They have trouble with swallowing (dysphasia), which causes difficulties when eating or drinking

Late-stage dementia

As dementia reaches the later stages, your parent’s memory loss, confusion, and other physical and emotional symptoms may worsen. They may be more prone to falls, and you won’t be able to leave them alone at all. At this stage, a professional live-in caregiver can provide short-term respite for you and your family. They can also provide ongoing care to keep your parent safe, day and night. You may also want to think about whether a care home would be a suitable option at this time.

Tips for caring for a parent with dementia at home

So, if you’re caring for a parent with dementia at home, how can you help make things easier as their dementia progresses? We’ve put together some tips and advice below:

Healthcare support

Contact your parent’s GP early on and find out what support is available. An occupational therapist can advise on adaptations to make. These may include walking aids, chair or bed raisers, additional handles, and stools for showers. The community mental health team can also offer guidance on medication to help your parent with anxiety or sleep.

As the dementia progresses, you may also need advice from other healthcare professionals. This can include speech and language therapists if your parent has difficulties with swallowing.

Your GP can also advise on issues such as the medical power of attorney. This can enable you and your family to make healthcare decisions on behalf of your parent as their dementia progresses.

Making life easier at home

Stick to the same routine each day. Get up, get washed, get dressed, and have meals at the same time and in the same order. This can help your parent to feel more in control.

Let them do as much as possible for themselves too. Buy clothing with Velcro, zips, and elasticated waists so they don’t need to do up laces, buttons, or belts. Placing reminders around the home can help too. Put labels on cupboards and drawers to remind your parent where to find everyday items such as mugs and plates. A wall calendar can also help them remember appointments, family birthdays, hair appointments, and events, such as outings and visits.

We’d also recommend making some practical changes to avoid falls. Get advice from your occupational therapist on this matter. They may suggest installing a shower or wet room with grab rails and placing additional handles and rails around the home. Other recommendations they may give include installing a stair lift, removing loose rugs and other trip hazards, and improving lighting.

Also, consider your parent’s safety in the home. Is the cooker safe, or could they leave the heat or gas turned on? An occupational therapist can advise on these types of issues.

Giving emotional support

When caring for your parent at home, it is important to be patient. It can be tempting to try to speed things up, but let them do things for themselves, at their own pace. It will help them stay as independent as possible and retain a sense of self-worth.

Also, remember to explain what’s happening as you go along. Reassure them that you’re not there to tell them what to do but to help and support them in making their own choices. It is also crucial to recognise and respect their feelings and try to remain as calm and reassuring as possible.

Planning for the future

It is important to get the right support when caring for a parent with dementia at home. We would recommend:

• Looking at what respite care or ongoing support options are available and finding a reliable agency
• Recognising where you can turn for help. Alongside your GP, organisations such as the Alzheimer’s Society, Dementia UK, Alzheimer Scotland and the Alzheimer Society of Ireland can offer advice and support
• Talking to your local Citizens Advice or Citizens Information about legal and financial matters and any allowances you or your parent may be entitled to
• Researching local care homes specialising in dementia. This is valuable in case it becomes impossible to keep your parent at home during the late stages of dementia

Caring for yourself

We understand how hard it can be to care for someone you love. It can sometimes feel overwhelming and emotionally draining. Here are some quick tips to help you also take care of yourself:

• Take time out to do something you enjoy
• Socialise with family and friends
• Don’t hesitate to get help when you need it
• Find out more about support for carers from the Alzheimer’s Society and Dementia UK

Respite care and support with the Nursing Guild

If you’re looking for respite care in Scotland or Ireland so you can take a well-deserved break, we can help – wherever and whenever you need us. We can offer:

• Emergency support
• Flexible short-term cover
• Regular planned respite care
• Continuing care after your parent has been in hospital
• Cover for times that you or your regular carer are unavailable

Get in touch