Dementia as a diagnostic category

Dementia as a diagnostic category is a collective term for a number of conditions with coinciding symptoms. According to the criteria of the 11^th revision of the International Classification of Diseases (ICD-11) (World Health Organization, 2018), dementia is primarily connected to failure in memory function and at least one other cognitive function in such a degree that function in activities of daily living (ADL) is affected. The Diagnostic and Statistical Manual of Mental Disorders, 5^th edition (American Psychiatric Association, 2013),mentions six cognitive functions that may be affected: complex attention; executive ability; learning and memory; language;

motor and visual perception; and social cognition. The risk of dementia increases

with higher age, making the condition generally related to older age (Prince et al., 2015). With some variance between the different causes of dementia, it may also occur at a younger age. When diagnosed at an age below 65 years, it is defined as early- or younger-onset dementia (Winblad et al., 2016).

Types of dementia

Alzheimers disease and its subgroups are the most common forms of dementia, making up about 60 % of the incidents (Livingston et al., 2017). It is followed by vascular dementia, dementia with Levy Bodies and frontotemporal dementia. In addition, there are a number of other, rare causes of dementia. Apart from vascular dementia, the common forms of dementia are caused by a condition of degenerative structural and/or neurochemical brain damage. These changes may start to occur as much as twenty years before the first symptoms appear. Vascular dementia stands out from the other common types as it is caused by underlying cardiovascular conditions (Engedal & Haugen, 2018a, 2018b). It is, however, not uncommon that Alzheimers disease coincides with vascular incidents, making the pathological picture complex (Livingston et al., 2017).

Behavioral and psychological symptoms

In addition to the cognitive symptoms, behavioral and psychological symptoms in dementia (BPSD) are also common. These ranges from emotional symptoms, such as apathy – which is most common – depression or irritability; delusional symptoms, ranging from delusional ideas to hallucinations; disturbances in motor function, including agitation; various changes in circadian rhythm and sleep patterns; or changes in appetite and eating patterns and preferences (Cerejeira et al., 2012). When assessing BPSD, it is crucial to be aware of possible underlying conditions, such as unmet needs, environmental triggers or underlying medical conditions (Kales et al., 2015). In addition to being burdensome in themselves and impacting function in everyday life, symptoms of dementia may also represent a safety risk for the persons living with the condition, such as by wandering, faults in self-administration of medications or fire hazards (Douglas et al., 2011).

Diagnosing dementia

In general, a dementia condition is characterized by an increase of symptoms and a progressive decline in cognitive and ADL-functions. The symptoms, especially in an early phase, vary both between the various underlying conditions and between individuals. After a diagnosis is set, median survival is 3-9 years for people aged 65 years and above, although it may be as long as twenty years, indicating a large degree of variety (Winblad et al., 2016). Still, we have seen that many may live with a dementia condition for a long time before a diagnosis is set, and an estimate of 20-50

% are not diagnosed (Prince et al., 2015). A Norwegian study among 1000 homecare receivers, aged 70 years and above, found that 41.5 % fulfilled the diagnostic criteria for a dementia diagnosis. Of these, only 19.5 % had a registered or known diagnosis (Wergeland et al., 2014). Diagnosing dementia is a complex task, involving blood tests and brain scans. It is also reliant on an examination of the persons medical history, and the exclusion of other underlying conditions that may cause the symptoms is crucial. The primary diagnostic tools are cognitive tests and questionnaires both for the person and for proxyrating by informal caregivers

(Engedal & Haugen, 2018c, 2018d). In a systematic review, Velayudhan et al. (2014) identified 22 validated cognitive tests for use in diagnosing dementia. In Norway, the Norwegian National Advisory Unit on Ageing and Health (Ageing and Health) has developed a comprehensive collection of pre-diagnostic assessment tools for use in the primary healthcare (Ageing and Health, 2019). This also includes interview guides for conversations with the person with probable dementia and their informal caregivers, an assessment of everyday technology use and a scale to assess

caregivers’ relative stress (Greene et al., 1982). Table 1 provides an overview of the assessment tools that are recommended by Ageing and Health in addition to two commonly used scales used to determine the degree of decline in cognitive and ADL-function.

Table 1. Pre-diagnostic assessment tools in dementia Name Assessing Short description Mini Mental State Examination (MMSE)* (Folstein et al. 1975; Strobel & Engedal, 2016) Cognitive function 30 item cognitive test within the following domains: orientation; registration; attention and calculation; recall; language. Global Deterioration Scale for Assessment of Primary Degenerative Dementia (GDS) (Reisberg et al. 1982) Cognitive function 7 points scale assessment: 1 signifies no cognitive decline, 2-3 signifies degree of cognitive decline without dementia, 4-7 signifies degrees of dementia. Informant Questionnaire on cognitive declining in the Elderly (IQ-CODE)* (Jorm & Jacomb, 1989)Cognitive function 16 item questionnaire on change in function over the last 10 years including: memory, learning, handling equip learning, decision-making, calculation, resonating– proxy rated– Score 1-5 on each item– 3 indicates no chan The Lawton Instrumental Activities of Daily Living Scale (IADL)* (Lawton & Brody, 1969)

Instrumental ADL- function 8 item questionnaire: using the telephone; shopping; preparing food; housekeeping; doing laundry; using transportation; handling medications; handling finances– 3-5 point score on each item– proxy rated. The Physical Self-Maintenance Scale (PSMS)* (Lawton & Brody, 1969)Physical ADL-function 6 item questionnaire: toilet; feeding; dressing; grooming; physical ambulation; bathing – 1-5 point score on each item– proxy rated. Functional assessment staging (FAST) (Reisberg, 1988) ADL-function7 points scale assessment: 1 signifies no difficulties in ADL-function, 2-4 signifies increasing challenges in AD function without need of support, 5-7 signifies increasing need of support in maintaining ADL-function. Neuropsychiatric Inventory-Questionnaire (NPI-Q)* (Kaufer et al., 2000) Neuropsychiatric symptoms (BPSD)

12 item questionnaire: delusions, hallucinations, agitation/aggression, depression, anxiety, elation, disinhibition, irritability, motor disturbance, nightime behaviors, appetite/eating– each item scored according to severity (1-3 experienced distress (1-5) – proxy rated. Cornell Scale for Depression in Dementia (CSDD)* (Alexopoulos et al. 1988) Depressive symptoms 19 item questionnaire within 5 domain: mood related signs, behavioral disturbance, physical signs, cyclic functi ideational disturbance - proxy rated. *Part of recommended examination from the Norwegian National Advisory Unit on Ageing and Health

Degrees of dementia

As a rough gradation of the severity of dementia, according to the degree of how the condition affects the individuals ability to cope in everyday life, dementia is often graded in mild, moderate and severe degrees (World Health Organization, 1993). In mild dementia the symptoms influence the ability to cope in everyday life. In

moderate dementia, the symptoms make the patient dependent on support from others to manage everyday life and BPSD. When the dementia condition has progressed to the severe stage, the ability to manage is severly reduced, and most are in need of continuous care. Using the Mini Mental State Examination scale (MMSE), a

commonly used diagnostic tool, in general, a score of 30 suggests no dementia, 26-29 suggests questionable dementia, 21-25 suggests mild dementia, 11-20 indicates moderate dementia and less than 11 is counted as severe dementia (Perneczky et al., 2006). This classification should, however, be treated with precaution. For example, higher cut-offs should be used if the person has higher education (O'Bryant et al., 2008). In the seven point Global Deterioration Scale for Assessment of Primary Degenerative Dementia (GDS) (Reisberg et al., 1982) the first three stages are defined as pre-dementia with cognitive impairment, while the last four stages define degrees of dementia.

Dementia in nursing homes

Due to the increase in BPSD combined with an incresing need for care and support, dementia is recognized as the most important reason for nursing home admission (Gaugler et al., 2009). In Norway, an estimated 85-90 % of all persons with dementia will at some point be admitted to a nursing home (Vossius et al., 2015), and a study from 2007 found dementia in 80.5 % of a sample of 1163 Norwegian nursing home residents (Selbæk et al., 2007).