Sarah’s story – “Dementia UK was our saving grace”
Sarah reflects on reaching crisis point when her husband, David, was diagnosed with young onset dementia and the support her family have since received from Dementia UK.
People with dementia can often experience anxiety, whether they have a history of anxiety or have never experienced it before.
Anxiety in a person with dementia may be caused by a combination of confusion, worry and feeling overwhelmed. It can also be a symptom of some forms of dementia. On this page, our specialist Admiral Nurses explain how anxiety can impact someone with dementia, treatment options and the support available.
What is anxiety?
Anxiety is a feeling of nervousness, worry or unease. Everyone feels anxious at times, however in some people, it becomes so intense that it interferes with everyday life. In this case, it may be a diagnosable mental health condition, often known as ‘anxiety disorder’. This is characterised by excessive apprehension over real or imagined threats, for example a sense of fear or dread about what might happen in the future.
Anxiety can have a significant impact on someone’s day-to-day life. For example, if they become overwhelmed by social situations, they may avoid going out and withdraw from other people, leading to loneliness and isolation.
Symptoms of anxiety
Symptoms of anxiety can be mental or physical.
Mental symptoms of anxiety
- restlessness or agitation
- a sense of dread
- feeling out of control
- feeling overwhelmed
- feeling constantly tense or ‘on edge’
- difficulty concentrating
- difficulty making decisions
- low mood
- irritability
- fatigue (mental or physical)
- feeling detached from reality
- panic attacks
- withdrawing from social contact
Physical symptoms of anxiety
Physical symptoms can include:
- light-headedness
- difficulty sleeping
- heart palpitations
- chest pains
- tense or sore muscles
- shaking
- sweating
- stomach ache, nausea, diarrhoea or vomiting
- difficulty swallowing
- headaches, including tension headaches or migraine
- numbness and tingling
- feeling hot or cold
- being easily startled
- pins and needles
- shortness of breath/rapid breathing
How is anxiety different from dementia?
Anxiety is a condition that affects the mind, whereas dementia is related to physical changes in the brain. Anxiety is often treatable and reversible, but dementia is progressive. Symptoms like memory problems, confusion and disorientation will worsen over time, and there is currently no cure.
How common is anxiety in people living with dementia?
Anxiety is very common in people living with dementia, and research is ongoing to establish what links the two conditions.
Anxiety seems to be more common in people with dementia who still have a good understanding and awareness of their condition, as they may naturally worry about how their symptoms will progress and the impact on them and their family. However, sometimes people develop anxiety in the mid stages of dementia as part of a collection of symptoms known as ‘behavioural and psychological symptoms of dementia’.
Anxiety is also more common in certain forms of dementia, such as vascular dementia and frontotemporal dementia (FTD).
Can anxiety cause dementia?
Having anxiety now or in the past doesn’t mean that someone has or will develop dementia. However, in some cases, an initial episode of anxiety in later life may be an early symptom of dementia.
Untreated depression is known to be a risk factor for dementia, and there is often an overlap between depression and anxiety, so if someone is experiencing low mood – regardless of whether or not they already have a dementia diagnosis – it’s important for them to see their GP.
Causes of anxiety for people living with dementia
There are many reasons someone living with dementia may have anxiety, such as:
- feeling stressed or worried about their diagnosis
- worrying about finances, work, their health or relationships
- medication side effects
- experiencing hallucinations or delusions
- worries about how dementia will affect them in the future
- worsening dementia symptoms
- social isolation
- lacking mental stimulation
- their needs not being met (for example, being unable to express physical needs like hunger or pain, meaning they can’t be addressed)
- sundowning: a state of intense confusion and anxiety that typically occurs in the evening and gives people a strong sense of being in the wrong place or time
Diagnosing anxiety in people living with dementia
If anxiety is affecting someone’s daily life, it is important that they seek help from their GP.
If possible, support the person to take a self-assessment questionnaire before their appointment. It is also useful to keep a symptom diary – family members and friends can contribute to this as well, as they may have noticed changes or triggers that the person themself is not aware of, especially if they lack insight into their own symptoms or deny that there is a problem.
How to speak to a GP
A GP can usually make a diagnosis of anxiety based on what the person tells them. If the person with dementia is seeing their GP, it’s a good idea to go to the appointment with them, so you can share your observations. The GP may also do or arrange some tests (for example a blood test, blood pressure check and check of heart rhythm) to rule out conditions with similar symptoms, such as thyroid problems or vitamin deficiency.
The GP should ask the person about their symptoms and:
- how they are affecting them mentally and physically
- how long they have had them
- how often they are experiencing them
- if there are any triggers for these feelings
- whether there is a family history of anxiety or depression
- whether they have had episodes of anxiety or depression in the past, and if so, whether they were formally treated for these episodes
Treating anxiety for people living with dementia
While anxiety can be distressing for those with dementia and their carers, it is often treatable and manageable.
Minimising triggers
Anxiety in a person with dementia may have specific triggers, for example unexpected changes in routine, certain activities like medical appointments, being in an unfamiliar or busy place, or a reminder of a difficult time in their life.
If you can identify these triggers, you can try to minimise them. For example, if you are going out, you might be able to prepare the person by explaining what to expect in small, digestible chunks; or if they need to carry out a particular task, you could break it down into small steps so they don’t become overwhelmed.
Diet
A balanced diet supports overall mental health and wellbeing and can make anxiety more manageable. However, dementia can often affect someone’s ability to eat a healthy diet. For example, they may not recognise the signs of hunger, forget to eat or have difficulty preparing meals.
If the person struggles to prepare food, try to help them by providing a variety of healthy snacks and meals, including those they can eat independently. For example, you could keep chopped fruit and raw vegetables in the fridge so they can help themselves, or see if they qualify for meals on wheels.
Vitamin deficiency can impact mental state, and this is a risk if the person with dementia has a reduced appetite or has difficulty with swallowing that affects their ability to eat. If you are concerned about the person’s nutrition, speak to their GP or specialist. It may be possible to refer them to a dietitian or nutritionist to discuss how they can be supported, including whether taking vitamin supplements might be helpful. Read more on eating and drinking.
Exercise
Physical activity is known to improve mental wellbeing as well as maintaining good health, so it’s important to support the person with dementia to be as active as possible.
The type and amount of physical activity the person does will depend on their own abilities and preferences, and how much support they need. If they like to run or cycle but are vulnerable if they go out alone, consider whether you or someone else could go with them. If they are overwhelmed by large groups or lots of noise, going to the gym or pool at quieter times or looking for dementia-specific sessions might help. If they have mobility problems, they may be able to do chair-based exercises. Everyday tasks like housework and gardening also count.
Lifestyle changes
In addition to supporting the person to eat a healthy diet and take exercise, try to encourage them to keep alcohol intake to a minimum. While many people with dementia enjoy an alcoholic drink, it can have a negative impact on mental health as well as increasing the risk of confusion and falls.
Caffeine can also increase anxiety in significant quantities, so be mindful of this and encourage the person to try alternatives like decaf coffee or fruit teas.
Therapy
Therapy may be helpful for a person who is living with anxiety and dementia. Its benefits will depend on things like the person’s insight into their own symptoms, their ability to communicate and their stage of dementia.
Talking therapies
Cognitive behavioural therapy (CBT) and other forms of talking therapy such as counselling seek to help people understand their thoughts, feelings and behaviour; and teach them how to make positive changes. Talking therapies do, however, rely on the person having a good level of insight into their difficulties and good communication skills, so may only be effective in the very early stages of dementia.
If you think the person with dementia would benefit from talking therapy, encourage them to speak to their GP. They can also refer themselves for NHS talking therapy.
Music therapy
For some people with dementia, music therapy has been shown to improve their thinking, feeling, perception, mood and behaviour. It can be used as part of a care plan. This can also introduce a social element when done in groups, helping to alleviate the social isolation some people experience.
Doll therapy
Doll therapy involves the person with dementia being given a doll or soft toy animal to engage with to help relax and calm them. The act of caring for the doll or toy gives the person a sense of purpose and something to focus on.
Anti-anxiety medication
In some cases, anti-anxiety medication or antidepressants may help a person with dementia who is experiencing anxiety, especially if it’s severe, although they will often be advised to try other options first. The person’s GP will be able to talk through the potential benefits and possible side effects of taking medication to treat anxiety.
Antidepressants may also be prescribed, and could be helpful for symptoms of frontotemporal dementia such as compulsive behaviour, a lack of inhibitions or overeating.
Caring for someone with dementia who is experiencing anxiety
If you support a person with dementia who is experiencing anxiety and/or depression, these tips might help:
- Look into mental health or dementia support groups, in person or online
- Support the person to take any medication as prescribed – pill organisers, wall charts or reminders on their phone can be useful
- Talk to them about how they are feeling and what you can do to help
- Encourage good sleep habits
- Tell family and friends (with the person’s permission) that they are experiencing anxiety so they can offer support
- Support them to engage in activities that they usually enjoy, like exercise, gardening, craft, singing, dancing and volunteering
- Spend time reminiscing and sharing photos, memories, favourite music, films or books
- If the person is experiencing suicidal thoughts, contact their GP as soon as possible. In an emergency, take them to A&E or call an ambulance
Getting further support
If you need advice on anxiety or any other aspect of dementia, please call the Dementia Helpline to speak to a specialist Admiral Nurse on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December) or email helpline@dementiauk.org.
If you prefer, you can also book a phone or video appointment with an Admiral Nurse.
