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Managing anxiety and depression in a person living with dementia

When someone is diagnosed with dementia, it is natural to experience a range of emotions. For some people, this develops into persistent depression or anxiety – and it is important that they get support.

Depression is a state of low mood that lasts for weeks or months and interferes with a person’s everyday life.

Symptoms include:

  • persistent low mood or sadness
  • feeling helpless or hopeless
  • low self-esteem
  • tearfulness
  • feelings of guilt
  • irritability
  • withdrawing from friends and family
  • loss of motivation and enjoyment in life
  • difficulties with decision-making
  • feeling anxious or worried
  • thoughts of self-harm or suicide
  • psychosis in some people (hallucinations, delusions, unusual thoughts)

Depression can also cause physical symptoms, including:

  • sleep problems
  • slow speech and movement
  • changes in appetite and weight
  • aches and pains
  • constipation
  • low energy
  • low sex drive
  • changes in menstrual cycle

Anxiety is a feeling of fear or unease. Everyone feels anxious at times, but it can become so intense that it gets in the way of everyday life.

Symptoms include:

  • restlessness
  • a sense of dread or things being out of control
  • feeling constantly ‘on edge’
  • problems concentrating
  • irritability

Physical symptoms include:

  • dizziness
  • difficulty sleeping
  • heart palpitations
  • tense or achy muscles
  • trembling
  • sweating
  • stomach ache or nausea
  • headaches
  • pins and needles
  • shortness of breath

It is often assumed that people with dementia do not experience depression or anxiety but that is not the case.

Reasons for depression or anxiety in a person with dementia may include:

  • the emotional impact of a dementia diagnosis
  • the effect on their work, relationships, finances and social life
  • worries about how dementia will affect them in the future
  • worsening dementia symptoms
  • social isolation
  • lacking mental stimulation
  • their needs not being met

Mood changes can also be a symptom of some forms of dementia, such as vascular dementia and Lewy body dementia.

People with dementia may have difficulty expressing that they are feeling anxious or depressed. However, there may be clues in their behaviour, for example:

  • agitation
  • pacing or fidgeting
  • needing constant reassurance
  • irritability
  • sundowning’: a state of intense confusion and anxiety in the evening
  • sleep changes, eg waking early or sleeping more
  • becoming withdrawn
  • changes in appetite
  • tearfulness

Because of the similarity in symptoms, dementia is sometimes misdiagnosed as anxiety or depression, which may delay an accurate diagnosis.

This can be a particular issue for people who develop dementia symptoms before the age of 65 (known as young onset dementia), as some healthcare professionals lack awareness of dementia in younger people and how it presents.

Similarly, depression or anxiety may be overlooked in a person with dementia as the symptoms may be put down to their dementia.

Depression-related psychosis may also be missed, as symptoms such as hallucinations and delusions may occur in dementia – particularly Lewy body dementia.

If low mood or anxiety are affecting someone’s daily life, it is important that they seek help.

If possible, support the person to take a self-assessment quiz first.

It is also useful to keep a symptom diary – family members and friends could contribute to this too.

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

It is helpful for a family member or friend to go to the GP with the person to offer support and provide information about any changes they have noticed.

A GP can usually make a diagnosis of anxiety or depression based on what the person tells them. They may also take blood tests to rule out conditions with similar symptoms, such as thyroid problems or vitamin deficiency.

For many people, the symptoms of mild to moderate anxiety or depression can be eased without medical treatment. The following may help:

  • physical exercise
  • relaxation exercises
  • a healthy, balanced diet
  • talking therapy, eg cognitive behavioural therapy (CBT) or counselling
  • mindfulness
  • alternative therapies, eg acupuncture, reflexology or herbal remedies

Generally, these strategies are more effective in the early to middle stages of dementia – people in the later stages may find it hard to engage with them.

In some cases – for example, if the strategies above have not helped or the person’s anxiety or depression are more severe – medication such as antidepressants may help. These may also be prescribed for the symptoms of frontotemporal dementia.

If you support a person with dementia who is experiencing anxiety and/or depression, these tips might help:

  • Support the person to exercise. 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 have mobility problems, they may be able to do chair-based exercises. Everyday tasks like housework and gardening also count
  • Encourage them to limit alcohol, which can lower mood, and caffeine, which can affect sleep
  • Help the person plan, prepare and eat healthy meals
  • 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/depression 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
  • Ask their GP about talking therapies – although these may be harder for the person to engage in as dementia progresses
  • Try introducing a doll or soft toy that the person can ‘care for’ – this may make them feel more purposeful and less isolated
  • 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

To speak to a dementia specialist Admiral Nurse about depression, anxiety or any other aspect of dementia, call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December), email helpline@dementiauk.org or you can pre-book a phone or video appointment with an Admiral Nurse.

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