Behaviour of Concern: Anxiety

A person living with dementia (PLWD) who has anxiety may have some of the following symptoms:

• Thoughts: Worry, anguish, apprehension,
• Emotions: Fearfulness, unease, dread
• Physical Sensations: Tensed muscles, tremors, fatigue, nausea, hyperventilation/shortness of breath, headache, insomnia, palpitation (associated with autonomic hyperactivity)
• Behaviours: Avoidance, hand wringing, pacing, restlessness, frequent requests for assistance and reassurance (Burns et al., 2012)

Unmet Needs:

Tom Kitwood proposes that PLWDs have five key psychological needs: comfort, attachment, inclusion, occupation, and identity; which are all centred around the fundamental need for love. Meeting these needs is central to person-centred dementia care and wellbeing. More information about the Psychological Needs can be found here. (Kitwood, 1997, as cited in Dementia Singapore, 2024b).

When these psychological needs are not met, it may likely trigger poor states of physical and psychological health in PLWDs. One way this presents itself is through the symptoms of anxiety. The table below shows examples of unmet needs that may lead to anxiety in PLWDs.

Fear and Confusion:

With the cognitive changes that come with dementia, PLWD may experience daily challenges that may trigger fear, confusion and anxiety. The table below shows examples of possible triggers in the different stages of dementia.

(Alzheimer’s Society, 2023; Burns et al., 2012)

Environmental Factors:

Certain factors in the environment may play a significant role in triggering anxiety in PLWDs.

(Burns et al., 2012)

Some of the widely used tools/scales used by clinicians to assess for anxiety in PLWDs  include the following: 

Global Assessment Tools:

• Neuropsychiatric Inventory (Cummings et al., 1994): The Neuropsychiatric Inventory (NPI) was developed to assess neuropsychiatric symptoms in persons with Alzheimer’s disease and other neurodegenerative disorders. It contains different subscales, including the anxiety subscale. Several versions of the NPI are available, such as the NPI-Questionnaire (NPI-Q), and they mainly differ in features such as assessment length and administration method.

For more information about NPI and NPI-Q, visit this link: https://www.dementiahub.sg/wp-content/uploads/2023/10/PDF4.1.6.1.6-Measures-on-Behaviour-Changes-Refresh.pdf

• Behaviour-Specific Tools (sub-header)
  • Rating Anxiety in Dementia Scale (RAID), (Shankar et al., 1999): The RAID contains four subscales: Worry, Apprehension and Vigilance, Motor Tension, and Autonomic Hyperactivity
  • Geriatric Anxiety Inventory (GAI), (Pachana et al., 2007): The GAI contains 20 items, including the following topics: Feelings of fear, worry, physical symptoms of anxiety, and concerns about the impact of worry and anxiety. It is a. While designed for older adults in mind, it is not specific to dementia. 

Anxiety in dementia is associated with the following outcomes for persons living with dementia:

• Poor quality of life
• Increase in other behaviours of concern (e.g., agitation, aggression, depression, etc.)
• Greater disability in activities of daily living
• Sleep disturbances
• Poorer cognitive functions
• Impaired social function
• Higher likelihood of future nursing home placement

(Kwak et al., 2017; Burns et al., 2012)

In addition, caregivers may also face the following:

• Higher burden and stress, due to increased dependence of the person living with dementia (e.g., “shadowing” behaviours or constantly searching and following caregivers)
• Feeling of guilt, due to emotional burden

(Burns et al., 2012)

The care team should attempt to identify triggers for the anxiety (Qazi et al., 2010, as cited in Burns et al., 2012). Triggers for anxiety should be addressed, instead of purely treating anxiety symptoms medically (Burns et al., 2012). Using the ABC approach can help with identifying patterns of anxiety. When searching for triggers, we could also consider the following: 

If none of the above approaches are effective, pharmacological options should be considered as the last resort. (Burns et al., 2012)

The care team should attempt to identify triggers for the anxiety (Qazi et al., 2010, as cited in Burns et al., 2012). Triggers for anxiety should be addressed, instead of purely treating anxiety symptoms medically (Burns et al., 2012). Using the ABC approach can help with identifying patterns of anxiety. When searching for triggers, we could also consider the following: 

If none of the above approaches are effective, pharmacological options should be considered as the last resort. (Burns et al., 2012)

The care team should attempt to identify triggers for the anxiety (Qazi et al., 2010, as cited in Burns et al., 2012). Triggers for anxiety should be addressed, instead of purely treating anxiety symptoms medically (Burns et al., 2012). Using the ABC approach can help with identifying patterns of anxiety. When searching for triggers, we could also consider the following: 

If none of the above approaches are effective, pharmacological options should be considered as the last resort. (Burns et al., 2012)

The care team should attempt to identify triggers for the anxiety (Qazi et al., 2010, as cited in Burns et al., 2012). Triggers for anxiety should be addressed, instead of purely treating anxiety symptoms medically (Burns et al., 2012). Using the ABC approach can help with identifying patterns of anxiety. When searching for triggers, we could also consider the following: 

If none of the above approaches are effective, pharmacological options should be considered as the last resort. (Burns et al., 2012)

• Difficulty Identifying Triggers for Anxiety:
  Sometimes, triggers may not be obvious to the caregiver. The above list of possible causes is not exhaustive and serves only as a guide. Persons living with dementia (PLWDs) also often have difficulty voicing out the source of their distress and anxiety. This can make it hard for caregivers to assess the triggers and intervene accordingly.

• Caregivers May Find It Difficult to Change Themselves:
  Caregivers are under a lot of stress as they juggle the huge responsibility of providing care for the PLWD. At the same time, their own stress can also affect the PLWD, causing an endless loop. When the caregiver rushes the person with dementia, for example, they may get more anxious, expressing in the form of behaviours such as agitation. This causes the caregiver more stressed. Although the caregiver might attempt to change their habits (e.g., not rushing), circumstances might make it difficult for them to change.

• Sometimes The Environment Is Difficult to Change and Control:
  For example, being in a mall may make the PLWD feel anxious due to the crowd, leading to overstimulation. While we can try to avoid such situation (for example, by avoiding going to the mall during peak hours), sometimes it is inevitable. For example, if the caregiver wishes to attend a support group session (held in a social service agency in the mall on a weekend) and he is bringing the PLWD along, he may have to navigate the crowd. This can be difficult as they are unable to control the environment.

• Progression of Dementia:
  As dementia progresses, individuals may become less responsive to strategies that might have worked in the past. This presents a challenge in maintaining engagement through non-pharmacological approaches. Caregivers may also need to continually adjust their strategies as the person’s cognitive ability declines.

Presenting issues  

Mr L is a 68-year-old Chinese man. He is married with two daughters.

Mr L and his caregiver (his wife) were referred to Memories Café. During one of the sessions, he displayed signs of anxiety, during an applied drama session. The session was held in a dance studio with about 35 participants. It was Mr L’s first time attending this new programme at a new location.

Shortly after the session started, Mr L began withdrawing from the activity and kept turning his head to look at the surroundings, appearing to be sensitive to noises and movements around him. He kept muttering, pacing, and fidgeting non-stop. He also started feeling restless, and his palms became sweaty.  

It had a minimal impact on the group, as other participants started to look at Mr L with curiosity and discomfort. This affected Mr L and his wife’s ability to enjoy the session and socialise with other members.   

Enriched Model 

Interventions