Managing the symptoms of dementia
Having control of our life is something we all value but frequently take for granted. Making decisions – on where we live, what we do, where we go and how we spend our money – are important to all of us. People with dementia also want to be in control of their lives. Early diagnosis and managing the symptoms effectively make this possible in the vast majority of cases.
The most common symptoms of dementia are highlighted in the section focusing on Early signs and diagnosis of dementia. Here, we will look at those symptoms and illustrate simple and effective ways for family carers and care workers to help someone with dementia to maintain their independence and confidence and live a meaningful and positive life.
It’s sort of early days, but I do know what I need to do... important to keep it busy. I’ve got various little bits in my pocket. I have a dictating machine and that’s why I have this little book... so I write everything down.Christopher Devas speaking about his diagnosis in ‘Maintaining your identify after a dementia diagnosis’
A carer whose husband, a photographer, has dementia tells NHS Scotland (in the video Living well with dementia), how she puts the emphasis on ‘trying to celebrate what he can do rather than focusing on what he can’t do... and photography is something that he does wonderfully'. That has to be a key message for all carers and care workers.
Decline in memory
Memory loss is distressing not only for people with dementia, but also for family and friends. Much can be done to help manage memory difficulties (that is, helping to remember people and recent events and take in new information). One of the most popular ways to help people stay in control of their lives is the use of memory aids in the home. For instance:
Memory boards: These are used by many people with dementia to write on, or to attach notes, to remind them about key appointments, visitors and things to do (such as seeing the doctor, a care worker’s next visit or putting the bins out).
Helpful signs: These can include putting labels on cupboards, drawers and containers to ensure items (such as tea, coffee, cups, plates and cutlery) can be easily found. Signs or relevant pictures on doors can help identify bathrooms, kitchens and bedrooms.
Memory joggers: These can include lists of important telephone numbers that are regularly used (and which can be kept next to – or stored on – the phone). Reminders of where things are (such as car keys, mobile phone, money and medication) can be kept near the front door.
Regular routines can help someone with dementia feel more secure, particularly if they match their expectations. Knowing when something is going to be done (for example cleaning and washing up on Mondays, ironing on Tuesdays, and social club visits on Wednesdays and Fridays) can also help avoid unnecessary stress.
‘If you need to communicate with someone with dementia, it’s important to encourage the person to do so in whichever way works best for them.’ Those 25 words (from the Alzheimer’s Society factsheet on communicating) perfectly sum up the importance of good communication with a person with dementia. Communication problems – that is, losing the thread of a conversation, forgetting words and names and not understanding everyday language – are common in dementia.
A care worker needs to:
- encourage conversation and active involvement in daily activities
- be patient, respectful and a good listener
- speak clearly and slowly, keeping questions and sentences short and simple
- pay attention to body language (quick movement or a tense expression may cause upset)
- use a person’s name regularly to help keep their attention
- consider whether other factors may be affecting communication (for example, pain, illness or side-effects of medication).
For more information on communication with people with dementia, please refer to the section, Communicating well.
Being unaware of what time it is and getting lost in their own home is a problem for many people with dementia. The anxiety caused by time and place disorientation (usually demonstrated by repetitive questions such as ‘What time is it?’ or ‘Where am I?’) can be considerable. Clocks, particularly those showing the time, day and date (and that are clearly visible day and night) can help ease time disorientation. Simple signs (as mentioned under ‘Decline in memory’ above) can be vital in helping people to find their way around their home.
Reassurance (for example that a key appointment, a meeting or social outing will not be missed) is very often more important than telling someone the right time. Some people with dementia find other ways to tell the time (such as a traditional kitchen timer or old-fashioned hour glass with which they may have been familiar in their past).
Recognition and coordination
A person with dementia may fail to recognise everyday objects in their home (such as a kettle, coffee jar or kitchen tap) or where the toilet or bedroom is located. Simple labels or signs (as mentioned under ‘Decline in memory’ above) can help avoid confusion and distress. It also helps if the objects are of a familiar shape and structure, making them easier to recognise.
Someone may struggle to recognise a friend, family member or neighbour. Tactful reminders or prompts (such as mentioning names in a conversation) will help provide reassurance. Difficulties in getting to familiar places can be overcome by providing written directions and/or pictures of the places themselves.
Difficulty with fastening buttons, tying up shoes, dressing, picking up a cup or switching on a light may well indicate coordination problems. It is important to give someone enough time to do these everyday things without trying to rush them or make them feel clumsy or incompetent. Reassurance will help avoid anxiety and embarrassment and may encourage the person to ask for assistance or guidance. Alternatives (such as clothes with zips rather than buttons and slip-on shoes) may help.
Emotional and psychological support
Coming to terms with a diagnosis of dementia and the changes it can bring can affect a person’s mood and behaviour. Anger, shock, sadness and denial are common reactions. A diagnosis can lead to a person with dementia and their family being overwhelmed by the information they receive and the number of visits they have to make to their GP and health specialists. A sense of helplessness and the stigma sometimes associated with dementia can cause depression and rapid deterioration in a person’s health and wellbeing.
Care workers with good communication skills and techniques can make a real difference. By listening with their ears as well as their hearts, they can encourage people with dementia to seek the right medical advice, help them obtain the right information and advice and provide practical support to help them maintain their independence. They have a pivotal role in encouraging people with dementia to join peer support groups to share experiences with people ‘in the same boat’, helping them to maintain hobbies and social interests that are critical to their wellbeing and assisting them in eating well and exercising regularly.
People from different cultural backgrounds, whose first language is not English, may need additional communication and emotional support. The solution here may be to provide care workers from similar backgrounds and arranging community peer support.
The benefits of staying active after a diagnosis are demonstrated in a video telling the inspiring story of Christopher Devas, a former sailor, magistrate and soldier who, after being diagnosed with dementia, has led a busy social life, singing in his local choir and becoming actively involved with his local branch of the Alzheimer’s Society. ‘I do know it’s important to keep busy,’ he says in Maintaining your identity after a dementia diagnosis: Christopher’s story. ‘I don’t even think about dementia... I just crack on (with life).’
For more information on behavioural changes, please refer to the section focusing on Behavioural challenges.
Commonly used medication
Symptoms can be managed by medication, depending on the type of dementia. The most common drugs used in the treatment of Alzheimer’s disease are Aricept (donepezil hydrochloride), Exelon (rivastigmine), Reminyl (galantamine) and Ebixa (memantine). Someone with vascular dementia may receive medication for high blood pressure, stroke or other related health conditions such as heart problems, diabetes and high cholesterol.
Access and download additional resources
Further reading Open
Alzheimer’s Society (2012) ‘Coping with memory loss’, Factsheet 526, London: Alzheimer’s Society.
Alzheimer’s Society (2012) ‘Communicating’, Factsheet 500, London: Alzheimer’s Society.
Alzheimer’s Society (2012) ‘Drugs used to relieve behavioural and psychological symptoms in dementia’, Factsheet 408, London: Alzheimer’s Society.
‘Living well with dementia’
This 10-minute NHS Health Scotland film looks at how people with dementia are enjoying good health and independence. Participants explain how they have taken up art, bowls, crosswords and other activities to keep their minds active and to live well with dementia.
‘Living well with dementia: practical tips and advice’
In this NHS Health Scotland film a number of people with dementia share practical tips for managing day-to-day living with dementia, such as putting up signs and instructions in the kitchen for safer meal preparation.
‘Maintaining your identity after a dementia diagnosis: Christopher’s story’
In this Alzheimer’s Society video, Christopher, 66, and his wife Veronica discuss the impact of getting a dementia diagnosis, as well as their techniques for getting on with life. Christopher, a former sailor, magistrate and soldier, leads a busy social life in Dorset. Available to view on YouTube.
Useful links Open
The Alzheimer’s Society produces a range of resources, including the 2013 publication The dementia guide (available online and in hard copy) aimed at people with dementia and their carers immediately following diagnosis. The Society also publishes over 80 factsheets including After a diagnosis (471), Coping with memory loss (526), Staying healthy (522) and Staying involved and active (505).
This 2008 Health Scotland publication is written for people newly diagnosed with dementia. It covers topics such as ‘Staying well’, ‘Practical support’ and ‘Planning for the future’.
Living well with dementia: practical tips and advice
In this NHS Scotland film a number of people with dementia share practical tips for managing day-to-day living with dementia, such as putting up signs and instructions in the kitchen for safer meal preparation.
The Dementia Diaries project involves people living with dementia keeping an audio record of their daily life with dementia. Contributions cover a number of themes: care and support, public perceptions, family and friends, living well with dementia, daily challenges, and policies and service provision. The project is the work of the non-profit communications organisation On Our Radar working with DEEP.
An NHS Choices film about memory cafes and how they offer people with dementia and their carers the chance to socialise and share information. Here, one group talks about what the experience means to them and how the specific activities offered at the café benefit them.
Still going strong
This online booklet by the Mental Health Foundation is for people who want to find out more about living with dementia. It is particularly useful if you have recently been told you have dementia and want to know more about what this might mean. The material covers ‘Is it dementia?’ ‘Living with dementia’, and ‘Planning for the future’ and includes a section on strategies that people with dementia have found useful.
Related pages from this section Open