Challenge the notion that ‘nothing can be done’
The idea that ‘nothing can be done’ about dementia is common. This is not true. Many people have told us that it is helpful to think of symptoms of dementia like other disabilities. If you have a disability from arthritis or following a stroke, you learn to adapt your life so you can still do things to look after yourself, get around, and live life. The same is true for dementia.
There are many things you can do to support the person with dementia and help them adapt to and manage their symptoms. For example, you might help them with practical things such as managing their bills, or you can act as an advocate to help them get treatments and therapies, such as cognitive stimulation or occupational therapy.
You may also need your own strategies and coping mechanisms to help you as a carer. Many carers have told us that supporting someone close to them is a privilege; but also constantly ‘thinking for two’ can be mentally and physically exhausting. Some symptoms, like being asked the same question repeatedly is draining. Supporting the person is not about giving up your life to solely focus on someone else, it is about making good choices that support the person with dementia to function better and lighten the load for you at the same time.
We work through common symptoms of dementia and give practical suggestions for how to deal with them to help the person you support and look after yourself. You can also look at Dealing with memory and thinking difficulties which is written for people with dementia and has more practical strategies.
Deal with memory, thinking and perception difficulties
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Memory and thinking difficulties define dementia, but don’t have to define life
Most of us think of problems with memory when we think about dementia. However, memory can be affected in lots of different ways and it also affects thinking too. The type of dementia will also affect how the person’s memory works. For example, someone with dementia might find it difficult to remember something that has happened recently but remembers the past well.
Someone with Lewy Body Dementia may initially have no problem remembering things that happened recently. Some people might be very forgetful of events, but others may have more difficulty remembering faces. In general, remembering very recent things might be harder than remembering people and memories from the medium to distant past.
There are many strategies for ‘working around’ or even addressing problems with memory and thinking. You can read the NHS dementia guide to find out about treatments and therapies.
Although there is currently no cure for dementia, the person you support may be able to take medication to help slow down their symptoms. This will depend on the type of dementia they have. Find out more about drug treatments at the Alzheimer’s Society.
Ask your doctor if you are not sure about dementia medication.
For Alzheimer’s disease or mixed Alzheimer’s disease and vascular dementia Acetylcholinesterase (AChE) inhibitors are usually the main treatment. Donepezil (Aricept), galantamine (Reminyl) and rivastigmine (Exelon) may be recommended for mild to moderate Alzheimer’s disease. Memantine (Nameda) may be offered if the person is unable to take AChE inhibitors or they already take an AChE inhibitor and dementia is more advanced.
For Dementia with Lewy Bodies AChE inhibitors donepezil or rivastigmine may be offered if for mild to moderate or advanced dementia. Galantamine or Memantine may be offered if the person cannot take ACheE inhibitors.
For Vascular Dementia AChE inhibitors or memantine may be offered if the person has mixed dementia with Alzheimer’s disease, Parkinson’s disease dementia or dementia with Lewy bodies.
For Frontotemporal dementia AChE inhibitors or memantine are not recommended.
New guidance on the use of dementia drugs also now recommend a trial of dual therapy such as an AChE inhibitor together with memantine if either of these drugs alone no longer seem to be working.
Common side affects
Side effects of AChE inhibitors can include nausea (feeling sick) and loss of appetite which usually get better after 2 weeks. Side effects of Memantine are usually temporary and include headaches, dizziness and constipation. If the person experiences effects, ask their doctor if patches are available instead of tablets.
There are four main types of therapies to help with memory and thinking. Cognitive stimulation therapy, reminiscence therapy, cognitive rehabilitation and occupational therapy, and cognitive (or brain) training. The word ‘cognitive’ relates to the thinking processes in the brain.
Group cognitive stimulation therapy
If the person you support is in the earlier stages of dementia they may be offered cognitive stimulation therapy (CST). The person can take part in group activities and exercises to help with their memory, problem-solving skills and language. CST is one of the few non-drug therapies to have shown positive effects in research studies on thinking and quality of life for a person with dementia.
CST is available through the NHS in some areas. Memory clinics may run courses. Ask the person’s doctor if CST is available in your area. If it is available, their doctor can make a referral. You can watch a short video about CST here.
Group reminiscence therapy
If the person you support is in the earlier stages of dementia, they may be offered reminiscence therapy. At reminiscence groups they can share their stories, memories and life experiences. They may find it easier to remember things about their past and enjoy talking about it with other people. Organisations such as the Alzheimer’s society and Dementia UK may offer local reminiscence services.
Your local library may also have reminiscence collections. Some museums offer local and online reminiscence resources
Cognitive rehabilitation or occupational therapy
Cognitive rehabilitation can help the person you support to use the parts of their brain which work better, to take over for the parts of their brain which work less well. This can help them to cope better with everyday tasks. This is normally offered when people are in the earlier stages of dementia. You can also help the person with cognitive rehabilitation.
A trained professional such as an occupational therapist can support the person to set and achieve goals to help with everyday tasks they may find difficult. You can ask their doctor about occupational therapy and cognitive rehabilitation. The doctor may be able to make a referral.
Doing mental exercises can help different parts of the brain which affect memory and thinking. This might be doing puzzles or playing special computer games. Read more about brain training. The science is not clear if brain training helps people with dementia. Some studies found it improves memory and thinking, others did not.
You might encourage the person you support to do intensive brain training (more frequently each week) as this may work better. They may only improve on the tasks they train on. For example if they practice remembering shopping lists, their memory might improve, but finding the right words may not.
Some people with dementia feel brain training helps them. If the person you support is interested in computerised brain training, some companies offer tailored brain training programs online. There is no evidence these programmes improve memory and thinking for people with dementia, and we do not specifically endorse these. You can try some for free, but for ongoing access there is a fee.
Memory aids can be very helpful
Memory aids are the simplest of strategies which you will likely already use. Shopping lists, diaries, calendars and electronic reminders are all memory aids most of us use every day. We look at some common problems and useful memory aids to help. However, for people with dementia the issue is often to remember to use the memory aid.
You can help by making memory aids easy to see, for example:
- a large calendar on the fridge
- a whiteboard in the kitchen with important information
- a sign at eye height on the back of the front door asking, “Have you got your house keys?”
You might also need to help the person set up a system to help them use memory aids as part of their daily routine. To start you might need to remind the person to use the them.
Vera’s husband used to ask her many times “What are we doing today?” Rather than responding with the day’s activities, Vera directed him to the calendar. After some weeks Ted started to look at the calendar for information. Making memory aids work takes time, effort and repetition. Although dementia makes it harder to learn new things, people with dementia can develop new skills and habits.
Below are common difficulties with memory and thinking. We’ve listed some strategies that carers have told us are useful:
Forgetting to do things at the right time
- Paper and pencil diaries, alarms on the phone or an alarm clock can work, but more frequently people with dementia won’t remember to consult the diary or recall what the alarm is reminding them of
- If you have a smartphone, use Virtual Assistants such as Amazon’s Alexa, Google, or Apple’s Siri because it’s easy to set reminders which sound an alert which also tell you what you need to do. To set the alarm, you just say to your phone or device “Alexa, set a reminder for me to take my medication for 4pm every day” or “Google, remind me to leave for the doctor at 8:30am on Tuesday 22nd May”. When at home, you can also set and get the reminders through a home speaker/microphone device connected to those systems (e.g. Amazon Echo, Google Nest, or Apple Homepod).
- This video shows how easy it is to set a reminder using an Alexa
- This video introduces the MyCarer Alexa skill and shows how it can be used to help a person with dementia stay independent.
Finding lost items, and remembering to take items out
- Set up a usual spot for these objects such as keys, wallet, and glasses. A bowl or hook for keys and a spot for the walking stick near the door are helpful so the person you support can put them when they come in. They might have several usual spots for their phone and keys, and glasses (the living room mantlepiece, bedside table)
- Help the person to set up a regular routine of putting important objects in their usual spot when you come home. Encourage them to return items to their usual place at home if they notice them in the wrong place
- When going out, encourage the person to develop a routine of counting the things they need to take with them (such as glasses – check, phone – check, pocket diary – check)
- Use a bright phone cover, a bright key chain so person can find these more easily
- It might be possible to track a lost mobile phone, watch or tablet. For example, Apple has a “Find My’ app to locate missing items. You can use this app to locate items on a map or send a message to the item to display a message on the lost item’s screen giving a phone number for the finder to call.
There are also technologies which can help you to locate lost items such as key and wallet finders. Find out more at Alzproducts.
Make sure you have back-up plans in place early
We all lose or misplace things from time to time. However, if things are regularly lost, or put in a ‘safe place’, it can be stressful, time consuming and sometimes expensive to find or replace missing items.
- Have spares of keys, glasses, medication, and other daily things. A key safe outside the person’s home may also be helpful. Install a key safe outside your home. You can get these at DIY shops or ask your local council for help with this
- Make copies of the contents of the person’s wallet or purse. Photocopy or photograph all your cards, front and back. Store this copy is a safe place. If wallets go missing it makes the job of notifying banks and other institutions a great deal easier
- Make copies of important documents. Wills, Powers of Attorney, mortgage and insurance documents and so on. These can be scanned and stored securely online or consider keeping copies off site in a secure location
- Password management. In our increasingly online world almost everything requires a password. If you do not have one already consider getting a password manager, which is a secure piece of software where you can store all passwords. Make sure passwords to computers, tablets and phones are also stored in very secure places.
Managing money and finances
Managing money can also be very tricky for the person and those supporting them. Financial arrangements can sometimes cause problems in relationships, so getting a good system in place can help the person to keep track and stay in control. Depending on your relationship with the person you may be able to help the person keep track of their money and finances or help them to find someone they trust. Here are some suggestions you can try:
- Help the person to set up automated bill payments
- Suggest they go through their bank statements with someone they trust each month
- Setting up a joint account gives two people access to a bank account. This is usually a family member who the person trusts
- Make sure the person appoints someone they trust with financial Lasting power of attorney so they have legal permission to handle their financial matters. Find out more in Plan Ahead
- Suggest the person pays using a contactless bank card to make sure they do not carry large sums of cash. The NHS dementia guide also has helpful tips for managing money.
Sensory and perceptual changes
Sensory perception is another way the person’s brain and thinking can be affected by dementia. For some people, dementia can affect the way their brain makes sense of what they see. Their eyesight might be fine, but their brain may not process this information correctly. For example, mistaking a reflection of someone in the mirror as a person. Find out more about changes in perception.
The person you support might have trouble judging how far away something is, or how deep a step is. They might have trouble picking out an object from its surroundings, particularly if it’s the same colour,
Owain used to set out Gwynneth’s clothes for the day on the bed. Gwynneth would frequently get angry saying “it isn’t helpful when there is no underwear!” Owain would get exasperated and say “it’s there it is right in front of you”. An occupational therapist explained that Gwynneth had difficulty ‘seeing’ white clothes against the white sheet. Placing the clothes on the contrasting bedspread solved this issue.
There may be issues if there is poor lighting and lots of shadows, or the background is patterned.
Fiona found walking on the swirly patterned carpet at the club almost impossible and needed an arm to steady her.
The person may also have difficulty interpreting information when there is a mirror, or reflections from wet or shiny surfaces or glare. They may also be more sensitive to sounds, touch, and sights. This can become overwhelming, and the person might find it difficult to cope. Other people may find smelling and tasting is more difficult, which can lead to losing interest in food.
Here are some suggestions for making things easier to see around the home. You can find more ideas at Managing symptoms at home.
- Make it easier to see things by reducing visual clutter. For example, leave one cup, kettle and jar of tea/coffee on the kitchen bench, rather than having many items out. Keep important areas of your house tidy.
- Buy important items in bright colours so they stand out visually (e.g. bright red glasses, or a yellow phone cover, or blue wallet)
- Add a contrasting background colour in important places where you can’t find things (e.g. put a white mat on your wooden table so that you can more easily see your keys and wallet).
This booklet by Life Changes Trust, written by a group of people with dementia provides insight into these changes which can be perplexing, and also gives practical suggestions to help.
Managing anxiety that can come with memory, thinking and perceptual difficulties
The worry about losing or forgetting important things, feeling unsure of what is happening or even who people are can make the person you support become anxious, worried or upset. Look for signs of anxiety such as constantly asking the same question, following you around, becoming upset or more confused.
Supporting thinking and memory and reducing their anxiety requires:
- A calm environment. People with dementia often find it difficult to cope with many distractions, such as trying to have a conversation with the TV on. Reducing noise is important to enable the person to function at their best. Marie created a ‘calm space’ where her husband Andy could retreat to when things threatened to overwhelm him in their noisy extended family home.
- Keeping an eye on how the person is. Making suggestions can be helpful, but try not to push new habits of checking calendars or placing items in the correct spot if the person is tired, hungry, feeling unwell or flustered. People with dementia will become more tired as their brain has to work much harder to process information. Often, they are at their best in the morning. Try to plan more challenging activities when they are feeling rested.
- Being outdoors: walking, cycling and being in nature can reduce distress and anxiety. Regular exercise can positively influence mood and helps get a better night’s sleep.
- Giving reassurance. Suggest a relaxing activity, like walking the dog, having a cup of tea or listening to music. Tell the person what they are doing well and help them to recognise everyday achievements.
- If the person is anxious, keep information simple, short and to the point. Try not to get frustrated and keep your voice calm. If you also become anxious or upset, it may be helpful to leave the situation for a while and return when you feel calmer.
- Identify with the feeling. Grace would become increasingly anxious and worked up about forgetting appointments. Her daughter Gabrielle, found that simply identifying with her mum’s frustrations about her forgetfulness helped reduce her anxiety.
Stay on task – avoiding distractions
The person you support may find it difficult to focus on a task or might be easily distracted. Staying focused may be made more difficult when there are other things going such as a radio or television programme on or other people are talking. With dementia, the brain has to work much harder to block out unnecessary distractions like noise.
To support someone to focus on a task, suggest that they:
- Do one thing at a time – ditch the multi-tasking
- Take frequent breaks
- Plan their day. Plan activities that demand a lot of attention when they are well rested. Many people find that they think best in the morning. Do routine or more physical jobs in the afternoon. If you have evening activities suggest a rest in the afternoon.
- Make sure their environment is calm and free of distractions such as excess noise.
- Have good general lighting, lamps and well lit areas to do tasks in. Did you know that the older eye receives much less light than a younger eye? A 75- year-old requires approximately twice the amount of light as a 45-year-old to have the same quality of vision.
To help the person you support to remember something it can be helpful to ask them to repeat a very simple version of what they need to do. As they were leaving to go to the shops Val asked David to go back into the house and get the prescription they left on the kitchen bench. David frequently found he would go back inside and think “what did I come in here for?” He knew it frustrated Val. David found that repeating the task in his mind “get the prescription from the kitchen” kept him from being distracted.
For more suggestions on managing when symptoms make daily life challenging, you might find the “By Us For Us” guides useful. These are written by people with dementia and carers and can be downloaded free online.
Help without taking over
If it takes the person you support a long time to do a task, or you notice they are struggling to do something they used to find easy can be frustrating or upsetting. The temptation is often to ‘take over’ and do the task for the person. However, taking over may mean the person loses skills more quickly. Also taking on these extra tasks might mean more for you to do. Setting up a task and providing encouragement can help the person you support maintain skills and preserve their self-esteem.
The person you support may have difficulty planning or starting tasks. There are ways you can help.
- Make opportunities for the tasks. Susan is always happy to fold the washing but never thinks to collect the basket from the laundry. Joe leaves the basket in the living room in sight of her favourite chair. Each time Susan spots the laundry basket she busies herself with the folding. You can think of this as ‘setting up the activity’ – doing the initial step that the person gets stuck on. Another example is washing up. Filling the sink with soapy water and having the dirty dishes stacked can be enough to get someone going.
- Give a prompt. Rather than ask for the task to be done, just casually draw their attention to it. “I brought the laundry basket in” or “I’ve stacked the dirty dishes” can get the activity going.
- If steps 1 or 2 don’t work, ask the person to do the task. “Would you be able to help me by folding the washing… doing the dishes?”
You can also consider avoiding some tasks altogether if they cause problems. (Sometimes we do things out of habit). Ron was getting slower at getting ready in the morning. Sue suggested he grow a beard to avoid shaving “You had a beard when we first met and you looked great!”
Try strategies to help with life
Reread the article and write down some strategies that you think might be helpful to you. Then try them out.
Also try the “my life plan” worksheet as a way to get your feelings out.
Ask the doctor
Ask the doctor about medication, cognitive stimulation therapy, reminiscence therapy or cognitive rehabilitation
Talk to other carers and people with dementia
Find out how others have found ways of managing issues with memory and thinking and give these a try.