With an ageing population, the number of people living with dementia is set to rise sharply. More than 450,000 Australians are living with dementia right now, and this number is expected to grow to over 1 million by 2050 (Brown et al., 2017). Dementia (or major neurocognitive disorder) is a neurodegenerative syndrome that causes progressive impairments to memory, executive function, language and adaptive functioning and can threaten psychological wellbeing in many ways.
People with dementia can experience changes to self-identity, loss of control and status, and diminished hope for the future. Social relationships can be harmed by stigma and behaviour and personality changes, such that people with dementia have fewer friends than people without dementia. People with dementia living in residential care rarely have friends (Casey et al., 2016).
It is not surprising that psychological illness is very common among people with dementia, and markedly more common than among older people without dementia. Up to 25 per cent of people with dementia meet DSM criteria for major depressive disorder, and 14 per cent will meet criteria for one or more anxiety disorders (Kuring et al., 2018).
Despite this, few people with dementia access psychological services. This is partly because, as noted by the Australian Psychological Society in their submission to the Royal Commission into Aged Care Quality and Safety, there is a major shortage of psychologists working in the aged and dementia care sector (Australian Psychological Society, 2019).
There also remains a misconception that people with dementia cannot benefit from psychological therapy, a belief perpetuated by ageism and therapeutic nihilism that judges people with dementia as unable to engage in therapy. There is also a tendency among healthcare professionals to equate any dementia with global infirmity. Contrary to popular belief, most people with dementia live at home with mild to moderate impairments.
This article provides practical advice for psychologists on supporting people with dementia. By improving the capacity of the psychology workforce to support people with dementia, we hope to help reduce the medicalisation of dementia care.
Assessment
Validated tools for older people can be suitable for assessing mood and anxiety in people with dementia where cognitive impairments are mild to moderate, including the Geriatric Depression Scale and Geriatric Anxiety Scale. Because dementia can limit the ability to express needs, adapted tools may be more suitable. For example, the Cornell Scale for Depression in Dementia is designed specifically for people with more severe cognitive impairments, and non-verbal scales like the Face Scale or Global Anxiety Visual Analog Scale can also be useful if the person is not able to speak clearly. People with dementia who are not able to express their needs verbally will do so in other ways; therapists must be highly attuned to non-verbal language and behaviours that may signal distress.
Therapists should be aware of the high risk for suicide in the months immediately following a dementia diagnosis. Dementia is the second most feared illness in our community (after cancer) and the psychological impact of this diagnosis is often underestimated. People with dementia may need support to adjust to their diagnosis and the associated changes to identity, role and vision for the future.
It can take longer to set therapeutic goals with people with dementia. Goals should be discussed organically throughout therapy. Small, behavioural or activity-based goals may be most appropriate and acceptable to the person. Consider that cognition will inevitably decline; stabilisation of affective symptoms or wellbeing may be the most suitable goal for some people.
Research evidence
The use of psychological approaches with people with dementia is a young science. Although few high-quality clinical trials exist, a recent systematic review of small studies concluded that cognitive behaviour therapy is effective in reducing depression and anxiety symptoms among people with mild to moderate dementia (Tay et al., 2019). There is also some evidence to support the efficacy of ‘problem-focussed’ or ‘problem-adaptation’ therapy. These approaches support clients and their carers to learn structured problem-solving skills and better integrate accommodations for cognitive impairment into daily life (Cheston & Ivanecka, 2017).
Validation therapy (VT) and its extension integrative validation therapy (IVT) focus on validating and generalising (rather than restructuring) the feelings and motivation of the person living with dementia, and was specifically designed for use with people with severe impairments living in residential aged care (Erdmann & Schnepp, 2016). ‘Third wave’ mindfulness-based approaches are of increasing interest for people with dementia, with some preliminary evidence that these therapies can improve quality of life even among those with severe impairments (Paller et al., 2015).
Beyond these manualised approaches, the availability of generic supportive group or individual psychotherapy is very important for people with dementia. These services are typically delivered to people living with dementia and care partners together and include psychoeducation, mutual support, and group problem solving. Aside from assisting the person to adjust to their diagnosis and any associated grief, these programs promote social connection, empowerment and confidence (Femiola & Tilki, 2017).
Making it work
Box 1 provides a summary of common adaptations to psychotherapy that can improve accessibility for people with dementia. Most research studies have reported a need for greater emphasis on behavioural approaches (rather than cognitive approaches) as cognitive impairment worsens. As such, behavioural strategies such as day structuring, activity planning, establishing routines and incorporating external memory aids into everyday life may be more salient for this client group.
Repetitious and written modelling and instruction can facilitate the implementation of agreed strategies with clients living with dementia. Encouraging clients to develop and implement their own memory aids can also improve motivation for therapy.
Further reinforcement of therapy strategies can also occur by having a trusted support person attending sessions. However, therapists need to be mindful that the level of closeness, trust and respect between the person with dementia and their support person varies widely. Welcoming a third person into therapy sessions should only occur with the expressed (verbal and/or non-verbal) consent of the person with dementia. Consider that shared sessions may not allow the person with dementia to address the issues most important to them.
‘No man is an island’
Therapists should remember that people with dementia inevitably have a network of personal and professional support people, so collaboration is important. Gaining permission from the person with dementia to speak with other providers can facilitate coordination of care, consistent messaging and frequent reinforcement. If the person lives in residential aged care, it is essential to work with care staff and families to ensure they understand and can support implementation of strategies between sessions.
Each of these collaborators may require therapy in their own right, particularly informal carers. Caring for a family member or friend with dementia can profoundly impact psychological wellbeing. While most carers experience joy and satisfaction from their caring role, many also report high levels of stress and ambiguous grief related to loss of future plans and changes to the person they care for. Informal carers may seek psychological support to cope with the diagnosis and adapt their own expectations and/or behaviour in response to the changing abilities of the person they support.
Paid dementia carers may also need support to cope with the high demands of their role. These staff usually work in complex organisational environments and are expected to provide a high level of care in short timeframes. They often face intense scrutiny and can find it difficult to identify and meet the needs of people with dementia. This can trigger challenging behaviour change. These experiences can be traumatic, and psychologists are well-placed to support paid carers to develop coping strategies and respond to the high demands of their job. Box 2 provides a case study of an effective approach to psychological therapy for a person with dementia.
Psychologists working with people with dementia should consider the ways in which cognitive and functional impairments may impact on therapy content and delivery. Each person with dementia is different and will have a different symptom profile. Frank and ongoing discussions about how these symptoms impact the person will allow the therapist to adapt as things change. Therapists should also be sensitive to the person’s level of insight into their symptoms, which will vary.
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