How neuropsychologists can assist carers of people with dementia

Caring for someone with dementia is one of the hardest roles. Given the evidence that the Australian population is ageing, the incidence of dementia is likely to increase and so is the need for carers. Neuropsychological assessment can assist not only in the diagnosis of dementia, but may also help carers and staff in aged care facilities with strategies for managing the often challenging behaviours of people with dementia. Carer burden is associated with increased behavioural disturbance in Alzheimer's disease (Coen, Swanwick, O'Boyle, & Coakley, 1997), so neuropsychologists have a valuable therapeutic contribution to make by providing recommendations that consider cognitive profiles in addressing concerning behaviour. The aim of this article is to describe some of the cognitive factors underlying behaviours commonly found in people with dementia and to outline potential interventions to reduce the impact on those who care for them.

A step further from the diagnosis

Dementia is often diagnosed by a geriatrician or a psychiatrist, and commonly referred for assessment by a neuropsychologist for clarification. Neuropsychological assessment can be particularly useful to identify the dementia subtype, as this can influence treatment options and provide assistance in understanding the behaviour of a person with dementia. The subtype and stage of dementia will determine the particular pattern of deficits and, therefore, which interventions will be effective and the type and amount of support that will be required.

Different dementia subtypes can lead to similar symptoms. Therefore basing a strategy on the diagnosis alone may be inefficient. Instead, it may be more beneficial for interventions to address the specific cognitive functions, whilst considering the person's background, presentation and circumstances. Table 1 below presents two examples of common challenging behaviours associated with dementia, and identifies possible management strategies depending on the specific cognitive changes underlying the behaviour.

As the causes of challenging behaviours are usually multifactorial (Bird, 2009a), helping carers understand some of the associated cognitive and emotional factors can make a difference to how they perceive and respond to them. Feedback based on a neuropsychological assessment can help carers understand that the behaviour is not planned or purposeful, but is the result of cognitive deterioration. Whilst some carers are satisfied to receive a diagnosis, many find it more useful to be aware of which cognitive skills are becoming ‘rusty', and how they translate into the person's behaviour. This leads naturally into ways of compensating for diminished abilities. It is important to take an individualised approach to considering how various reduced cognitive functions can impact on a person's behaviour (Bird, 2009b), as demonstrated in the boxed case illustrations.

When a person has impairments in multiple cognitive domains, it may not be clear which combination of these results in the behaviour. Strategies must be individualised, often using a trial and error approach. Neuropsychologists are ideally placed to provide crucial information regarding the cognitive underpinnings of behaviour and should remain involved after the assessment, taking an active role in strategy implementation. A person-centred approach is essential to assist people to compensate for lost abilities, whilst promoting self esteem and dignity. Many clients and carers experience anxiety and depression in the face of such difficulties. Psychological interventions can assist them in addressing and better managing their cognitive and emotional difficulties, helping them to live richer and more meaningful lives.

Case studies

Resident with dementia at an aged care facility

Mrs A is an 80-year-old retired woman recently diagnosed with Alzheimer's dementia living in aged care. She was referred for assessment, which revealed that her decision making capacity was reduced and she was unlikely to be able to live independently.

Mrs A was a proud, hard working single mother, who saw herself as an independent woman. Apart from prominent memory deficits, she exhibited marked difficulty with shifting attention, sequencing, working memory, abstract verbal reasoning, insight and problem solving. Mrs A was angry regarding her placement. She wanted to return home, and understandably, each time she was told that her home had been sold, she became agitated. She was particularly unsettled after her son's visits, which had become less frequent.

Following assessment, feedback was provided to assist staff in managing her cognitive, emotional and behavioural changes. Mrs A's reduced insight prevented her from seeing that she required assistance. She perceived herself as independent and staff were encouraged to assist in maintaining her pride and dignity.

Due to Mrs A's impaired reasoning, flexibility and memory, the following recommendations were made to staff and family: avoid reasoning with her, but rather reflect her feelings and gently redirect her attention; repeat information where required, but avoid reminding her that her home has been sold if she continues to become distressed about not going home; encourage bonding with her son (e.g., bring old photos to talk about and spend time organising together); and make her feel more at home (e.g., bring a chest of drawers from home so that clothes can be unpacked while she is "waiting" to go home). A proactive approach was suggested whereby Mrs A's son would alert the staff at the end of his visit so appropriate activity or redirection could be organised in his presence to help shift her attention.

Facility staff reported that avoiding reasoning with Mrs A and redirecting her attention had been useful, in that her unsettled periods had become shorter and she was adjusting to life in residential care.

Client with dementia living at home

Mrs F is a 69-year-old woman living at home with her husband and family. She was anxious and depressed, as she believed her memory was poor and she was no longer able to complete some tasks she previously found easy (e.g., cooking). The family were not forthcoming in assisting Mrs F as they were worried that helping her would exacerbate her depression.

On neuropsychological assessment, Mrs F had intact orientation, attention span and working memory. Abstract reasoning, verbal memory, visuospatial function and confrontation naming were severely impaired. Executive dysfunction was also present including planning, organising, flexibility, fluency, sequencing and impulse control. It was concluded that she most likely had Alzheimer's disease.

Feedback to the family about the diagnosis and identified cognitive deficits validated their concerns, opened up communication and ultimately brought them together. Mrs F no longer felt anxious and her family were able to assist in more organised and creative ways. Her husband agreed to help with food preparation, with Mrs F undertaking one task at a time. Mrs F expressed frustration about being unable to write clearly what she would like to tell her doctor. Her daughter made a checklist where Mrs F could tick appropriate phrases for discussion with the doctor (e.g., stomach problems).

The authors may be contacted at [email protected] and [email protected].