Caring for someone with dementia can be a challenging, stressful yet often rewarding experience. Remember, looking after your own health as a carer is just as important.
Having a better understanding of what dementia looks like and how it typically progresses will make caring for a loved one easier.
In this article, we’ve covered the different stages of Alzheimer’s disease, coping with the progression of dementia, providing assistance with everyday tasks, preparing your home and the support that’s available to dementia carers.
Use our directory to find a dementia care home near you.
According to the Alzheimer’s Association, Alzheimer’s accounts for between 60% and 80% of dementia cases.
While every person with Alzheimer’s disease experiences it uniquely, there is a certain pathway that your loved one will likely follow - these being the four stages. We’ve explained each of these stages below.
Preclinical Alzheimer’s disease is the newest addition to the recognised stages.
As such, there aren’t currently any criteria to diagnose Alzheimer’s disease in this stage. With that being said, research is underway to study potential medical signs (biomarkers) that may one day indicate the presence of Alzheimer’s before any symptoms are present.
During this stage, dementia and memory loss aren’t easy to detect. Your loved one will act as they normally would, including typical behaviours, personality traits and emotions. Preclinical Alzheimer’s can last for years before it becomes detectable. In fact, research suggests that somebody could have Alzheimer’s for as long as 18 years before it becomes detectable.
In this early stage of Alzheimer’s disease, the person with dementia will begin to sense that their memory is ‘slipping’. A diagnosis is often made at this point.
Though cognitive changes are still minimal, your loved one may struggle with things like:
Remembering new names and places
Following recipes or directions
Forgetting where they’ve placed items
Despite these changes, people at this stage can usually still live and function independently, including being able to drive.
Typically, this stage lasts for two to four years. Caring for somebody with dementia at this stage mainly involves monitoring their overall health and helping to recall information where needed.
Memory loss can be assessed within a memory clinic, with treatment options also offered.
As Alzheimer’s progresses into the mid-stage, symptoms will become more noticeable.
Here, a loved one with dementia will start to display changes involving their:
Memory loss will gradually become more pronounced. Similarly, habits like sleeplessness, wandering and confusion in familiar settings may become more common.
These changes will inevitably lead to questions about the safety of living alone. This is the stage where somebody with dementia will require increased hands-on care. Many families will consider a memory care facility or treatment within a dementia care home. Another option is dementia treatment at home - you’ll likely need round-the-clock support from carers for your family member.
This is usually the longest of the primary dementia stages, typically lasting between two and ten years.
This is the final stage of Alzheimer’s disease. Somebody living with dementia at this stage will often lose the ability to:
Recognise family members and friends
Respond to their environment
Perform day-to-day tasks without assistance (such as getting in and out of bed, getting dressed, eating and so on)
Generally, individuals in the late stage of dementia will need 24-hour care, making caring for a loved one at home with dementia very difficult and time-consuming.
Through each of these stages, your loved one will experience several changes. Understanding each of these changes and being properly prepared for them can help family and friends provide a caring and calm environment for your loved one. Having this understanding will also help you come to terms with what can be an upsetting and stressful time.
As dementia progresses, physical changes become noticeable. Feet may begin to shuffle or drag while trouble with balance and difficulty standing up or sitting down become common occurrences. These changes are largely caused by weak muscles and fatigue - both of which are dementia symptoms.
You can minimise these changes by encouraging your loved one to remain active for as long as possible. Something as simple as short walks or gentle stretching exercises can go a long way.
You can empower your loved one to remain more independent by only offering assistance when needed.
Cognitive changes refer to how the brain functions - with memory and thought processes being impacted. While everyone naturally experiences some cognitive changes as we age, these are more severe in people living with dementia.
Common cognitive changes for people with Alzheimer’s are:
Disorientation - Becoming lost in familiar places or getting confused about what time of day it is
Memory loss - Difficulty in remembering names and faces
A decline in the ability to socialise - Less interest in socialising. Eventually, this will lead to a lack of ability to properly communicate with others
Coordination and motor function skills - A varied loss at each stage of Alzheimer’s
You can look at resources like the Family Caregivers Alliance to find dementia support groups and local support.
As the brain struggles to process information and changes, a range of emotional responses are to be expected. A person with dementia will long to get back their daily routine and social life while having their independence promoted.
Your loved one may feel frustrated, depressed, or experience anxiety. It’s a lot for someone to process - but there are ways you can emotionally support your loved one:
Providing reassurance and letting them know how much they matter
Breaking down complex tasks into easier-to-follow steps
Encouraging involvement in activities
Recognising and respecting their feelings
Redirecting them away from uncomfortable conversations or memories
In the early stages of dementia, many people can enjoy their life in broadly the same way as they did pre-diagnosis.
But as symptoms worsen, the person living with dementia may begin to feel anxious and scared as they struggle to remember things and properly concentrate on conversations or complex tasks.
As a carer, it’s important to gently support the person in maintaining skills, abilities and an active social life. Providing dignified care while encouraging independence will make a huge difference to the person’s self-esteem and confidence.
Next, we’ve gone over numerous other everyday tasks and personal activities that may pose a problem and what you can do to help.
Regardless of whether or not you have dementia, having a well-balanced diet is an important part of leading a healthy lifestyle. People with dementia may not eat or drink enough, due to not realising they’re hungry or thirsty. This puts them at greater risk of constipation, headaches and heat-related conditions (including heat stroke and heat exhaustion.
Not recognising different foods
Forgetting what food and drinks they like
Refusing to eat food, especially nutritious foods
Requesting unusual food combinations
Follow these tips to make mealtimes a less stressful and more enjoyable experience for all:
If they’re up to it, involve the person in meal preparation and cooking
Set aside plenty of time for making meals
Be prepared for food swings. You may need to try stronger or sweeter foods
Provide finger foods if the person struggles using cutlery
Serve any drinks in a clear glass or coloured cup that’s easy to hold
Make sure your loved one has regular dental check-ups to treat any discomfort or pain in the mouth. The food-related behaviours we listed can also be caused by sore gums, ill-fitting dentures, swallowing problems (dysphagia) or confusion.
People with dementia will often experience problems related to using the toilet.
Urinary incontinence and bowel incontinence can be difficult to deal with. They can also represent an upsetting situation for yourself and the person you care for.
Sometimes, a person with dementia will simply forget where the toilet is or that they need the toilet.
Urinary tract infections (UTIs)
Constipation (which can cause additional pressure on the bladder)
Though it may feel a little awkward and uncomfortable, understanding toileting problems is really important. Don’t be afraid to keep your sense of humour when it comes to these situations (if appropriate).
The following tips will help someone with dementia when using the toilet:
Put a sign on the toilet door. Bright images and words work well
Keep the toilet door open and keep a light on at night. You could also consider sensor lights
Keep an eye out for signs that the person may need the toilet, such as fidgeting and standing up or down
Try and keep the person active, as a daily walk helps maintain regular bowel movements
Try to make going to the toilet part of a routine
If incontinence problems persist then ask your GP to refer the person to a continence adviser. They can offer guidance on things like waterproof bedding and incontinence pads.
It’s ordinary for people with dementia to become anxious about personal hygiene. They may need help with washing themselves.
Bath water being too deep
The noise created by water from an overhead shower
Slipping and falling
Getting undressed in front of someone else, even their partner
Washing is a personal activity, so try to be sensitive and respect the person’s dignity.
You can help out with washing and bathing while remaining respectful by following these tips:
Ask the person how they’d like to be helped (be prepared to stay with them if they don’t want to be left alone)
Re-assure them that you won’t let them get hurt
Use a bath seat or handheld shower
Use whatever shampoo, shower gel or soap the person prefers
Dressing is a tricky task for many people living with dementia. People with dementia may become uncooperative and resistant to daily activities like getting dressed. Often, this is a response to feeling out of control or confused by what they’re being asked to do.
When it comes to getting dressed, confusion can be avoided by reducing the person’s choices and removing rarely-worn clothes from their wardrobe. Any clothes left in the wardrobe should be loose-fitting and comfortable with easy-to-use zippers and minimal buttons.
To further help with independence in getting dressed, lay out each item of clothing in the order they’ll be worn.
Dementia can affect sleep patterns and cause problems with a person’s body clock.
Those with dementia may get up repeatedly during the night and become disoriented when doing so. They may try to get dressed, due to being unaware that it’s still night-time.
Often, sleep disturbances represent a stage of dementia that settles over time and stops being an issue.
In the meantime, try these tips to combat any dementia-related sleep issues:
Put a dementia-friendly clock by the bed that shows whether it’s night or day
Make sure the person gets plenty of daylight and physical activity during the day
Remove caffeine and alcohol in the evenings
Make the bedroom as comfortable as possible and have either a night light or blackout blinds (depending on what the person you’re caring for prefers)
Try and limit daytime naps
When caring for a loved one with dementia at home, don’t ignore their environment. Just as you’ll have to adapt as a caregiver, you’ll also need to adapt the home in a way that’ll keep your loved one safe and secure.
For better home safety, try and remove any clutter throughout your home. This creates safer walking paths while making rooms less visually overwhelming. Consider pairing furniture to simplify the environment as much as possible.
Because shiny floors are sometimes slippery and your loved one might see them as wet and difficult to walk on, it’s best to avoid these.
Mark any stairs with coloured duct tape or carpet tape to make them easier to see.
Making a bedroom safe means creating a space which is easy to see and navigate around.
Depending on how large the bedroom is, add lighted pathways and non-slip flooring for any middle-of-the-night bathroom runs. A comfortable and not-too-high-or-low bed will make for easier transfers. If there’s a nightstand or dresser next to the bed then try limiting the number of items on them to avoid confusion. Having a brightly coloured quilt will visually define the bed.
When caring for someone with dementia, the bedroom should be a visually appealing space, but not one that encourages spending too much time in it. If your loved one spends most of their day in the bedroom then loneliness and feelings of isolation may set in.
As we went over earlier, remove all but four or five of your loved one’s favourite outfits from their wardrobe - you’ll probably want to get their opinion on this! When the clothes are then laid out in the order they’re put on, your loved one will feel less confused and more independent.
Somebody with Alzheimer’s may struggle to see the edges of surfaces within a bathroom, particularly if they’re all the same colour. You can minimise this issue by adding bright accents. You could also paint the trim of the bathroom door red or add a coloured toilet seat so each of these individual elements stands out from one another.
Coloured, non-skid tape makes recognising the shower’s floor and the edge of a bathtub much easier. Tape also comes in handy around the sink and toilet.
Label the hot and cold taps with bold words and bright colours (hot and cold, red and blue) to prevent scalding. To be safe, you could turn down the temperature on your water heater. Bathing alone can be made easier by adding a tub seat or bench and a handheld shower spray. Grab bars by the bathtub and toilet will also prevent falls and reduce the chance of slipping.
Kitchens are filled with potentially dangerous items. From sharp knives to heated surfaces and dangerous chemicals, you should keep these out of sight where possible. Knob or dial covers are a simple yet effective stove/hob addition to prevent burns.
Labelling drawers and cabinets with big block letters or images will make what’s inside them much clearer.
Finally, a fire extinguisher and a working smoke detector with newly-changed batteries should be easily accessible within the kitchen.
The progression of dementia affects people’s communication skills and ability to express themselves. Here are some tips for better understanding and communicating with the person you care for:
Try to look for the meaning behind their words
Speak slowly and clearly while using simple language and short sentences
Questions that only need a ‘yes’ or ‘no’ answer will further keep the conversation simple
Avoid any questions that test memory - such as asking what they’ve been up to
Avoid causing any arguments about responses, even if what they say is wrong
Create a memory book to remember special occasions
Somebody with dementia living at home will increase their risk of wandering, getting lost and hurting themselves. It may seem as though someone with dementia is wandering aimlessly but there are several reasons why this can happen, including boredom, medication side effects or an attempt to fulfil a physical need like thirst, hunger or exercise.
The following safeguards can help with wandering:
Secure gardens - A fenced outdoor courtyard and appropriate supervision will create a safe space for wandering. Similarly, regular companionship care and memory-stimulating activities will help reduce wandering
Door locks - Install slide bolt locks on all exit doors. Install lower locks if your loved one is tall and higher locks if they’re short
Motion sensors - Adding these to any exit doors will provide you with a warning if your loved one is trying to leave
Registering your loved one for the Alzheimer’s Safe Return Programme will help your loved one be safely returned home if they do wander off.
Dementia can affect reaction times, reflexes and other aspects of driving, such as:
Eyesight and vision problems - Poor eyesight can affect the ability to see clearly from the sides or front-on
Hearing loss - It may become difficult to hear a car horn or siren
Mobility problems and pain - It may take longer to change gear, pull the handbrake or use the footbrake
Memory problems - Getting lost, confused or disorientated when driving in an unfamiliar area
Certain medications can also slow down reaction times or cause feelings of tiredness.
Ultimately, it’s your loved one’s decision (or that of the DVLA) to stop driving. With that being said, if you feel their driving ability is no longer safe then you have a responsibility to talk to them about it.
You might find it easier to discuss the issue by putting yourself in their shoes and thinking about the impact that giving up driving would have on your day-to-day life. If your loved one agrees to stop driving, be considerate and bear in mind that this may be a difficult adjustment.
Mobility centres offer lots of useful information, advice and assessments surrounding mobility and driving. They have trained staff who can assess somebody’s driving ability and look at how they could be helped to continue driving for longer (whilst remaining safe).
When caring for someone else, it can be easy to overlook your needs. Looking after your own health and making time for yourself can help you feel better and more able to cope within your caring role.
Caring for somebody with dementia can be an emotional and challenging experience. Unlike with other conditions, it can be difficult to share any feelings of guilt, sadness or confusion with the person you’re caring for, often leaving you feeling isolated.
Acknowledging these feelings is an important step. Remember that there’s no right or wrong way to feel. If you’re struggling to cope then speak to a doctor. They can tell you about the help and support available to carers, such as a support group.
Carers’ groups can be a good way to receive support from other carers who best understand what you’re going through. Through regular meetings, you can share experiences and relate to each other. Some carers’ groups will even offer talks, leisure activities and trips.
Ask your dementia adviser or social services about local groups. Alternatively, you could contact the following organisations:
Throughout the UK, several leading dementia charities aim to help those who have been diagnosed with dementia, as well as their families and carers.
These charities raise crucial funds to tackle the numerous aspects of dementia. These funds may go towards conducting scientific research into better treating the condition and supporting dementia staff, carers and families. Above all, these charities aim to assist people with dementia in leading dignified, independent and fulfilled lives.
Here are some of the most well-known and respected dementia charities from up and down the UK:
Scottish Dementia Working Group
Contented Dementia Trust
Lewy Body Society
RICE (Research Institute for the Care of Older People)
Online groups can offer a sanctuary of support amongst people in similar situations. They’re particularly useful if you’re unable to get out or need someone to talk to when nobody else is around.
Here are two brilliant online support groups for dementia carers:
Talking Point Forum (this is hosted through the Alzheimer’s Society website)
While some carers feel apprehensive about day centres, the variation in routine and being able to take some time for yourself can go a long way in benefiting yourself and the person you care for.
Some adult day care centres are only appropriate for those with mild dementia, while others can provide a specialist dementia service.
Initially, a daycare centre can take some getting used to for your loved one. If they seem distressed or unhappy at the thought of going to a day centre then speak to the staff. Because different day centres offer different activities and environments, some will be better suited to an individual’s social and cultural needs than others.
A memory cafe is an informal setting that people with dementia and their carers can attend together and chat with one another. Healthcare professionals are also often available for you to talk to in confidence.
Individual memory cafes focus on different aspects to provide a unique experience. Some will be activities-based, while others hone in on education.
Learn more about memory cafes through the Memory Cafe Directory.
Helping your loved one make decisions for their future while they’re still able to do so can allow them to feel confident and in control. As a dementia carer, it’ll also help you feel reassured that any necessary plans are in place.
If your loved one is still able to manage their finances then it might be a good idea to set up direct debits to pay for household bills. If they’d rather not do this then another idea is to directly contact the relevant gas, electricity and water companies. Let them know that your loved one has dementia and provide an alternative contact number so they can get in touch with you before cutting the person you’re caring for off if they forget to pay their bills.
Taking over somebody’s finances can be daunting. Make a start by locating all important documents, including bank statements, insurance policies, wills and pension details. Then, put these in a safe place. If you can't find a pension, you can use a pension tracing service to help with this.
The person you’re caring for could also set up a third-party mandate. This will permit you to manage their bank account.
As your loved one’s dementia reaches its latter stages, they’ll become increasingly dependent on the care provided by others.
People at this stage of dementia may lose weight, struggle with walking, become incontinent and behave in unpredictable ways.
Not everyone will show all of these signs, and not everyone will begin showing them at the same time.
When this stage of dementia is reached, caring for a loved one with dementia by yourself may quickly become overwhelming. If this is the case, then other options are available.
If your loved one’s care needs become too much for you to continue managing at home - even with the help and support of family members - then it may be time to consider other long-term options.
If you’re becoming exhausted and struggling to deliver an adequate level of care then it may be the right time for your loved one to go into a dementia care home.
While this is an undoubtedly difficult decision, there are limits to the care that you can provide, with a top-notch care home being more than capable of picking up the slack.
If the person you care for is moving into a care home, then familiar furniture, sentimental belongings, their favourite music and photos packed with memories can help them feel more settled.
Shinfield View Care Home in Reading
Sherwood Grange Care Home in Richmond, London
Jubilee House Care Home in Godalming
It can be a disorientating experience if the person you care for has to be admitted to the hospital.
This distress can be minimised by getting the name of someone at the hospital who you can speak to with any questions or concerns about the person’s care. Ensure all the staff know of your loved one’s dementia, what stage it’s at and any specific symptoms or treatments. You can also ask to be kept in the loop and involved in any decision-making.
We’d recommend writing down important facts about the person and giving this to the hospital staff. For example, how your loved one prefers to be addressed, their likes and dislikes, along with the practical help they’ll need.
You can download a copy of the Alzheimer’s Society’s This is me leaflet which gives you space to write about the person’s hobbies and interests, what may upset them, personal care and mobility requirements, sleep patterns and any other relevant information.
Those living with dementia often experience a gradual, long-term onset of symptoms. This can make it difficult to identify when late-stage dementia has set in. Late-stage dementia residents are often cared for in a palliative care home, where end of life care is given.
From your perspective, the best thing to do is ensure that their GP, medical staff and any care home staff know what plans have been put in place regarding future care.
If you’re caring for somebody with dementia at home, speak to your GP about local services that are available as the disease progresses.
Searching for a dementia care home can be a stressful and time-consuming operation. Thankfully, Lottie removes much of the difficulty from this process by connecting elderly people to the UK’s very best care homes through years of human expertise.
We offer a range of dementia care homes that provide round-the-clock care and an excellent standard of facilities and support.