By Associate Professor Nancy Pachana FAPS, University of Queensland and Professor Edward Helmes FAPS, James Cook University

Older people as a group show more variability on virtually any psychological characteristic than younger groups (Morse, 1993; Nelson & Dannefer, 1992). Within the older group, there is probably no other patient population that presents such diversity for the psychologist than those persons suffering from a form of dementia. This diversity is one of the reasons why working with people with dementia and their families, formal and informal carers, and with the health care service providers that serve them, is such challenging and rewarding work.

The prevalence of dementia in Australia is comparable to that of other industrialised countries, with roughly six per cent of the population aged 65 and older having some form of dementia (Pachana, in press). Some estimates suggest that approximately 24 per cent of those over 85 years have some form of dementia (Henderson & Jorm, 1998). Meta-analyses have demonstrated that the prevalence rate for dementia after age 65 doubles with approximately every additional five years of age (Jorm, Korten, & Henderson, 1987).

The prevalence of dementia in Australia is expected to triple by 2051. Over 165,000 Australians are affected by Alzheimer's disease alone. By 2040, it is expected that 500,000 people will be diagnosed with dementia in Australia. The financial costs of caring for persons with dementia is staggering - direct health costs total $3.2 billion, of which $2.9 billion is spent on residential care costs. By 2050, dementia costs to the Federal Government may exceed three per cent of gross domestic product (GDP), up from the nearly one per cent of GDP spent today (Alzheimer's Australia, 2003).

Types of dementia

Dementia itself is a patchwork umbrella term for a wide range of largely progressive neurological disorders characterised by changes in cognition, personality and behaviour. The most common form of dementia is Alzheimer's disease (AD). The remaining causes of dementia commonly encountered in clinical practice include vascular dementia (VaD), frontotemporal dementia (FTD) and dementia with Lewy bodies (DLB; Apostolova & Cummings, 2010; Lichtenberg, Murman, & Mellow, 2003). Dementia may also be associated with other conditions such as chronic alcohol use (Oslin, Atkinson, Smith, & Hendrie, 1998), and Parkinson's disease (Marttila & Rinne, 2009).

Alzheimer's disease

Alzheimer's disease is characterised by the presence of neurofibrillary tangles (twisted masses of tiny filaments inside nerve cells), and neuritic plaques (abnormal clumps of degenerating brain cells surrounding a protein core). These changes in the brain begin most commonly in critical brain areas such as the hippocampus and gradually spread to more lateral and frontal areas in the cortex of the brain. The course of Alzheimer's disease is characterised by increasing cognitive dysfunction, including difficulties with remembering new information and changes in language, particularly the ability to name objects, people and places (Pachana, in press).

Alzheimer's disease also includes changes in personality and emotional functioning, such as apathy and agitation, and behavioural problems such as wandering and aggressive acts. Over 25 per cent of Alzheimer's patients are reported to experience hallucinations or delusions at some point during the course of the disease (Mega, Cummings, Fiorello, & Gornbein, 1996). Aggressive behaviours and health changes such as incontinence are among the primary causes of institutionalisation in Alzheimer's patients (O'Donnell et al., 1992).

Vascular dementia

Common causes of VaD are infarcts and vessel disease in the brain, thus, this type of dementia generally has a more sudden onset than AD. According to the DSM-IV-TR, vascular dementia is characterised by the development of multiple cognitive deficits (American Psychiatric Association, 2000). Compared to Alzheimer's disease, vascular dementia is associated with vascular disease risk factors and focal neurological symptoms (e.g., weakness or tingling in extremities), and generally involves better preserved memory. Psychiatric and behavioural changes in individuals with vascular dementia are more likely to include depression, emotional changeability and hallucinations, while Alzheimer's patients may be more likely to experience delusions and loss of insight regarding their disease state (Mendez & Cummings, 2003).

Frontotemporal dementia

Core features of FTD include prominent changes in personality and behaviour, whereas memory changes may not appear until the later stages of the disease. Judgment and insight are often profoundly impaired in the early stages of the disease. In fact, a hallmark feature of FTD is a decline in interpersonal conduct, such as rude and/or inappropriate sexual comments or behaviours, and general disinhibition. The underlying causes of FTD remain unknown, however, genetic factors are strongly implicated (Mendez & Cummings, 2003).

Dementia with Lewy bodies

Waxing and waning cognition, recurrent complex visual hallucinations, and spontaneous features of parkinsonism are core features of LBD. A characteristic of LBD are its Lewy bodies - that is, abnormal cells present in lower or subcortical regions of the brain in Parkinson's disease but which are instead seen in cortical areas of the brain for people with LBD. It is important that LBD be distinguished from psychotic disorders, as one feature of the disease is a severe sensitivity to neuroleptic medication in up to 50 per cent of patients (Mendez & Cummings, 2003).

Course and stages of dementia

Dementia strikes for the most part later in life but individuals may experience early onset dementia in their 50s and early 60s, while some rare forms of dementia associated with known genetic causes may strike at even younger ages (Freyne, Kidd, Coen, & Lawlor, 1999).

The Australian Government suggests that the progression of the disease is generally divided into three stages, although this can vary between individuals (Department of Health and Ageing (DoHA; 2009). In the early stage, symptoms may include confusion and memory loss (particularly of recent events), disorientation, changes in personality and judgment, and problems with routine tasks. In this stage, the changes observed in the person suffering from dementia may be mistakenly attributed to normal old age or stress. In the second, moderate stage, the symptoms from the early stage become more apparent, and the person may become harder to manage and may require further assistance with daily activities. Additional symptoms may include mood swings, increased forgetfulness, wandering or pacing, and difficulty recognising family and friends. Finally, in the advanced stage of dementia, the person may lose the ability to respond to people and their environment, and may not be able to perform basic tasks without assistance. There is usually a loss of communication skills, significant memory loss, major changes in behaviour, as well as increasingly impaired mobility (DoHA, 2009).

Approximately 90 per cent of patients with dementia experience behavioural and psychological symptoms of dementia (BPSD), which present grave challenges to formal and informal carers (Mega et al., 1996). Examples of such behaviours include wandering, hallucinations and delusions, and aggression. Such behaviour is almost always a major departure from the person's typical behaviour and therefore poses a greater strain on family relationships than other causes of similar behaviours, such as those associated with some developmental disabilities.

A good working knowledge of the various subtypes of dementia, and how their course and symptoms might play out within the context of the person's care situation, is vital. For example, aggressive and inappropriate sexual behaviours in persons with FTD are particularly distressing for family members caring for the person at home, and distressing and challenging for staff in residential care facilities (RCFs) who must be mindful of the safety and care of other residents with dementia as well as their own.

Differential diagnosis

Knowledge of dementia syndromes must be supplemented with keen insight into the many conditions that may mimic dementia, the foremost of these being depression. Older adults with depression present with more prominent memory complaints than younger cohorts (Burt, Zembar, & Niederehe, 1995; Raskin, 1986), and may easily end up with a diagnosis of dementia if seen by a mental health practitioner with little experience in working with older adults. This is most unfortunate, as while dementia remains an illness without possibility of effective treatment of causal factors for the present, depression in later life is quite amenable to treatment with empirically validated psychosocial approaches with or without medication as an adjunct to the therapy (Lebowitz et al., 1997; Reynolds et al., 1999). The treatment of depression in older adults in the early stages of dementia poses issues similar to those cases of depression in individuals with other life-threatening conditions.

Another common condition confused with dementia is delirium. Delirium reflects an underlying medical condition which, when treated, results in the resolution of symptoms that include waxing and waning consciousness, limited attention span and psychiatric and behavioural changes (Lipowski, 1989; Parkar & Kunkel, 1997). Delirium is commonly seen in older adults experiencing urinary tract infections (Manepalli, Grossberg, & Mueller, 1990) or infections resulting from recent surgical procedures or placement of catheters (Inouye & Charpentier, 1996). If treated properly, older adults with delirium should regain their cognitive faculties, but often delirium goes unrecognised and untreated in acute hospital settings as well as RCFs (Parkar & Kunkel, 1997).

Dementia screening instruments

Screening instruments are of great relevance in inpatient, outpatient and nursing home settings (Pachana et al., 2010). A wide variety of older adult specific screening tools exist, which can be of great assistance to the clinician wishing to decide whether more in-depth assessment or referral is required. The screening instruments outlined below all involved psychologists in their development and are summarised in the table on the following page.

Cognitive screening

Commonly used cognitive screening tools of interest to psychologists include the Modified Min-Mental State (3MS) examination (an extended and better-validated version of the Mini-Mental State Examination [MMSE] by Teng and Chui, 1987). The Addenbrooke's Cognitive Examination-Revised (ACE-R; Mioshi, Dawson, Mitchell, Arnold, & Hodges, 2006), developed in the UK, is another strong substitute for the MMSE, particularly if frontal functioning is an issue. The Rowland Universal Dementia Assessment Scale (RUDAS; Rowland, Basic, Storey, & Conforti, 2006), an Australian developed and normed version of the MMSE, is useful in the Australian context, as is the Kimberley Indigenous Cognitive Assessment (KICA; Smith et al., 2007), an instrument designed as a cognitive screen for older Indigenous people. The Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE; Jorm & Jacomb, 1989) is a useful informant-based measure of cognitive functioning. All of these have been developed and normed on older populations.

Affective screening

Commonly used affective screens for older adults include the Geriatric Depression Scale (GDS; Yesavage et al., 1983) and the Geriatric Anxiety Inventory (GAI; Pachana et al., 2007). The GDS and GAI exist also as brief five-item screening instruments. If substance abuse is a concern, the Michigan Alcoholism Screening Test - Geriatric Version (MAST-G; Joseph, Ganzini, & Atkinson, 1995) is a good instrument to use for individuals without or with only very mild cognitive impairment.

Caregiver screening

With respect to instruments for carers, the Zarit Burden Inventory (ZBI; Zarit, Orr, & Zarit, 1985) is probably the most widely used instrument for caregivers, but the newer Positive Aspects of Caregiving measure (Tarlow et al., 2004) is useful for capturing both positive and negative aspects of caregiving. Other measures of note include the Revised Memory and Behaviour Problem Checklist (RMBPC; Teri et al., 1992), which is useful for gauging changes in caregiver stress differentially on behavioural and memory axes, as often interventions target behaviours more effectively than memory, given the progressive nature of dementia. The psychosocial assessment rating scale, the Multidimensional Observation Scale for Elderly Subjects (MOSES; Helmes, Csapo, & Short, 1987), highlights other roles for psychologists: those of consultant and staff trainer for care staff of RCFs and community care agencies. Dalton et al. (2002) adapted MOSES for use with people with developmental disabilities.

SCREENING TOOLS USED IN DEMENTIA

Type

Name

Description

Cognitive

3MS
(Teng & Chui, 1987)

  • Samples a broad variety of cognitive functions, including orientation, registration, recall, simple language and construction
  • Includes a range of difficulty levels

ACE-R
(Mioshi et al., 2006)

  • Brief test, sensitive to the early stages of dementia and capable of differentiating between subtypes of dementia (e.g., AD, FTD, progressive supranuclear palsy and other parkinsonian syndromes)
  • Incorporates five sub-domain scores (orientation/attention, memory, verbal fluency, language and visuo-spatial)

RUDAS
(Rowland et al., 2006)

  • Short, culturally-fair, cognitive assessment scale designed to identify dementia and monitor cognitive function over time

KICA
(Smith et al., 2008)

  • Designed for the Aboriginal and Torres Strait Islander community
  • Gathers information about previous medical history, smoking and alcohol use, emotional wellbeing/depression, cognitive and functional status, and activities of daily living

IQCODE
(Jorm & Jacomb, 1989)

  • Informant-based screening test for individuals who are unable to undergo direct cognitive testing
  • Measures cognitive decline on two aspects of memory (acquisition of new information and retrieval of existing knowledge) and two aspects of intelligence (verbal and performance) from a pre-morbid level

Affective

GDS
(Yesavage et al., 1983)

  • 30-item self-report assessment used to identify depression in the elderly

GAI
(Pachana et al., 2007)

  • 20-item screening tool designed to measure symptom severity across a range of anxiety disorders and symptoms in the elderly

MAST-G
(Joseph et al., 1995)

  • Focuses on alcohol use
  • Self-report test measuring alcohol abuse and dependence in the elderly

Caregiver

ZBI
(Zarit et al., 1985)

  • Self-administered questionnaire that assesses burden associated with functional/behavioural impairments and home care context
  • Takes into account common areas of concern such as health, finances, social life and interpersonal relationships

 

Positive Aspects of Caregiving
(Tarlow et al., 2004)

  • Brief measure that can be used in a range of environments to evaluate caregivers' positive perceptions of their position

RMBPC
(Teri et al., 1992)

  • 24-item caregiver report measure of observable behavioural problems in dementia patients
  • Provides scores for patients' problems (memory-related, depression and disruptive behaviours), as well as parallel scores for caregiver reaction

MOSES
(Helmes et al., 1987; Dalton et al., 2002)

  • Measures the psychiatric, physical and sociopsychological functioning of geriatric patients who are no longer able to function independently and who require continuous supervised care
  • Samples self-help skills, disorientation, depression, irritability and social withdrawal

 

Roles for psychologists

There are multiple settings in which psychologists see people with dementia - homes, clinics, hospitals and residential care facilities (RCFs). In each of these settings psychologists may be undertaking a variety of tasks: assessing for suspected dementia; offering education and counselling for families; assisting RCF staff in managing challenging behaviours; offering suggestions to improve daily functioning and quality of life for the person with dementia; and continuing to provide evidence-based treatment for psychological disorders as required (Molinari & Hartman-Stein, 2000; Oanes, 1998; Powers, 2008).

In light of the broad diversity of contexts and roles within which psychologists may operate when offering services to persons with dementia, the knowledge base required is extensive (Hinton et al., 2007; Oanes, 1998).

Issues that arise for older adults with dementia in their home include caregiver stress factors, and determining diagnosis and prognosis for the older person and family (Baumgarten et al., 1994; Feldman, 2008). Provision of diagnostic and prognostic information is one of the main roles played in clinics, particularly specialised memory clinics. Recommendations for planning for the future and determination of decision-making capacity are also services provided by specialised clinics. These clinics are most likely to conduct comprehensive assessments, and be in a good position to evaluate capacity for making decisions on medical treatments, financial decisions, and other important matters. Determination of decision-making capacity requires clinical skills, knowledge of the relevant legislation, and particular skills in questioning clients to evaluate their reasoning about decisions (Lo, 1990).

Services in hospitals

Services offered by psychologists in hospitals cover a broad range of activities from assessment and treatment of pain to traditional mental health issues. Psychologists in hospitals are thus more likely than many to face the issue of differentiating delirium and depression from dementia. Here good knowledge of tools such as the Confusion Assessment Method (CAM, a delirium monitoring instrument; Inouye et al., 1990), as well as good working relationships with treating medical staff members are invaluable. Assessing and treating persons with dementia who have life-long histories of serious mental illness present a great challenge to mental health as well as general medical wards; here input from a psychologist can be of immense value to the treating team. Comprehensive clinical assessments can often assist the team in formulating treatment plans which avoid revolving door acute admissions and which place the client at the centre of the care plan.

Services in residential care facilities

Relatively few psychologists work within RCFs but opportunities for useful services range from consultations and services relating to staff stress and wellbeing, to promotion of patient-centred care programs and related staff education. Direct assessment is one option, as is the development of relevant assessment instruments such as MOSES. Other issues include carer stress, life transitions, disruptive behaviour, mood and anxiety disorders, and personality disorders. Sound knowledge of this broad range of issues and their treatment is best provided by experienced psychologists. Adaptation of common treatment methods may be required to accommodate sensory changes, the slowing of cognitive processes, and treatment protocols for anxiety and depression. The behaviour problems and symptoms of dementia (BPSDs) have complex determinants - personal history, relationships with carers, environmental factors and individual factors (Hurt et al., 2008; Low, Brodaty, & Draper, 2002; Sture, 2000).

One of the challenges facing RCFs is the management of BPSDs in a climate of high turnover among care staff and restricted budgets. Often the physical or chemical restraint of an individual can be seen as necessary to minimise disruption to staff and other residents and for the safety of all concerned. At the same time, this approach is now not condoned in many settings and the use of any form of restraint is seen as unacceptable (Hamers et al., 2008). Provision of advice on the management of such individuals is another useful role for psychologists. Direct behavioural treatment of BPSDs is also a role that psychologists can adopt. Bird and his colleagues have demonstrated the efficacy of such an approach (Bird, 1999; Bird, Llewellyn-Jones, Smithers, & Korten, 2002). This research has also shown that psychosocial approaches can be more cost-effective than psychiatric management of BPSDs (Bird, Llewellyn-Jones, & Korten, 2009).

In conclusion, psychologists have many roles to play in the care of persons with dementia and their families. As the numbers of persons diagnosed with dementia continue to rise, so too will the demand for psychologists well trained in delivering services for this population. This important training issue is a great challenge facing psychology in Australia in the next decade.

The authors can be contacted on n.pachana@psy.uq.edu.au and edward.helmes@jcu.edu.au.

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InPsych October 2010