The number of older people is growing worldwide, including those surviving into very old age, due to advances in medicine and management of disease, lower rates of infant mortality and better public health awareness. The number of people with dementia is also rising, and is due to reach 1 million in the UK by 2021. The facts and figures in this chapter relate to the UK but, as the number of older people is growing worldwide, much of what is written here will be applicable to other countries; with the caveat that cultural differences need to be taken into account. Older people are often supported and cared for by family and friends, many of whom are older themselves. Hence, there is a huge financial and social cost of caring for older people, especially those with dementia.

Older people are the biggest users of health and social care services. Occupational therapists therefore work with older people in many settings, including specialist older adults’ mental health and dementia services, as well as emergency, medical and surgical wards in general hospitals and local authorities. Specialist mental health services are provided to older adults on inpatient wards and increasingly via a range of community-based services such as community mental health teams, home treatment teams and memory services. Occupational therapists increasingly provide services within care homes, often on an in-reach basis.

Services are provided within the context of ever-changing health and social care policy, albeit focused on a number of consistent themes. These include raising awareness of mental health issues and dementia; early diagnosis and timely access to services to support older people and their carers; the need for all staff in contact with older people to be aware of, and appropriately trained to meet, their needs; and specialist staff available in consultative, advisory and educational roles. There is an emphasis on enabling older people to remain as independent as possible for as long as possible within their own homes, with dignity and choice at the heart of service provision. There is also a key health promotion agenda focused on encouraging people to age healthily and actively, both mentally and physically (see also Ch. 2).

Older people can experience a combination of physical, psychological, sensory and cognitive challenges. Occupational therapists need to be able to differentiate between changes caused by ‘normal’ ageing and the impact of other physical or mental health conditions that are not an inevitable consequence of getting older. Many older people experience the impact of losses often experienced in old age, such as loneliness, loss of independence and roles and bereavement. However, depression and dementia are not inevitable features of the ageing process.

Each older person is unique but ‘older people’ are often depicted as a homogeneous group by the media using negative stereotypes. Older people can experience ageism and discrimination in terms of service provision with health and social care professionals making prejudicial assumptions about the validity of interventions.

Occupational therapists usually work as members of an interprofessional team, often linking with other statutory and voluntary agencies. Within older adults’ mental health services, it is common for occupational therapists to cover a combination of generic mental health and specialist occupational therapy roles and activities. While this offers the opportunity to develop more generic skills in managing risks and crises, service demands may reduce the capacity to deliver occupation-focused interventions. A range of interventions are used by occupational therapists working with older people, both on a one-to-one and a group basis (see Ch. 16 on the therapeutic use of groups) and there is growing evidence to support the effectiveness of these and for occupational therapy specific programmes.

The first half of this chapter describes the importance of occupation in maintaining health and wellbeing in older age, highlighting health-promoting occupation-based interventions. The causes and impact of later life depression, and the potential occupational therapy role, are summarized. The causes, prevalence and diagnosis of dementia are outlined, along with a description of person-centred care and the range of evidence-based interventions that are commonly used by occupational therapists. The second section describes the occupational therapy assessment of older people and the most commonly used assessment tools. The Developmental Model (Perrin et al. 2008) that underpins the practice of occupational therapy in dementia is outlined. The role of community occupational therapy in dementia, and occupational therapy provision to care homes, is illustrated through examples of the profession’s developing evidence base. Finally, practice issues such as mental capacity, assessing and managing risk and working with carers are discussed.

OCCUPATION FOR MENTAL HEALTH AND WELLBEING IN OLD AGE

The urge to engage in purposeful and meaningful activity is a basic human drive that is essential for physical and mental health and wellbeing, regardless of age. Our individual personality, life story, interests, values and beliefs influence our choice of activity, and what we do partly defines who we are. Participation in meaningful activity has a positive effect on the health, self-esteem, happiness and life satisfaction of older people (Gregory 1983; Bowling et al. 1997).It also reduces mortality (Glass et al. 1999) and is a key contributor to quality of life (Age Concern and Mental Health Foundation 2006). Older people are encouraged to ‘use it or lose it’ (Gilhooly et al. 2003), as physical activities can postpone cognitive decline (van Gelder et al. 2004) and frequent cognitively stimulating activity can reduce the risk of dementia (Verghese et al. 2003).

The Well Elderly Study

Conducted in southern California, the ‘Well Elderly Study’ (Clark et al. 1997; Jackson et al. 1998) recruited 361 people aged 60 or over and living independently in the community. Participants were randomly assigned to either a preventative occupational therapy ‘Lifestyle Redesign’® programme, a social activity group or a control group. Results showed significant benefit for people attending the occupational therapy group in terms of general health, physical and social functioning, mood and wellbeing. The social activity programme was no more effective in promoting health and wellbeing than receiving no intervention.

Lifestyle Redesign®

Lifestyle Redesign® is an occupation-based approach to healthy ageing. It aims to empower older people to examine and analyse their own occupations in order to enable participation in meaningful activity, thus maximizing independence and function, and potentially preventing or reducing a negative spiral of ill-health and disability. The programme is facilitated by occupational therapists and runs for 9 months. Participants attend a weekly, 2-hour group session and also have a monthly hour-long one-to-one meeting with a facilitator to focus on achieving their own individual goals. Sessions include didactic teaching alongside activity participation, with participants rating the role of each activity on their own health and wellbeing. The social activity intervention was a programme of the same duration run by non-professional staff providing activities to promote social interaction. The control group did not receive any intervention.

Lifestyle Matters

Inspired by Lifestyle Redesign®, a feasibility study was conducted (Mountain et al. 2008) in England to develop and evaluate a similar, occupation-based health promotion intervention tailored for the UK population. ‘Lifestyle Matters’ (Craig and Mountain 2007) was developed through consultation with older people. In total, 28 people, aged 60 or over and living in the community, were recruited. Two groups were established to receive the programme, which ran for 8 months, with weekly group sessions and monthly one-to-one meetings. One group was facilitated by two occupational therapists and the other by two occupational therapy support workers. Quantitative outcomes measured cognition, depression, functional dependency and quality of life and indicated an upward trend in quality of life. Qualitative analysis indicated that participants experienced benefits such as improved self-efficacy. The occupational therapists and support workers were equally effective as facilitators, although the occupational therapists also provided timely response to meet additional needs such as implementing assistive technology solutions. The efficacy and cost-effectiveness of Lifestyle Matters is currently being evaluated through a multisite randomized controlled trial funded by the UK’s Medical Research Council’s Lifelong Health and Wellbeing (LLHW) Cross-Council Programme.

Based on this evidence, occupational therapy interventions such as Lifestyle Matters are recommended within the NICE public health guidance, to ‘promote mental wellbeing of older people in primary and residential care’ (NICE 2008) along with physical activity and walking schemes. Occupational therapy input to train health and social care staff to effectively enable older people to participate in activities that help maintain or improve health and wellbeing is also recommended.

LATE LIFE DEPRESSION

Depression is a mood disorder, characterized by continued low mood and/or loss of interest and pleasure in nearly all activities for most of each day for the preceding 2 weeks; accompanied by one or more of the following symptoms: marked weight loss or gain, or increased/decreased appetite; disturbed sleep pattern; psychomotor agitation or retardation; feelings of fatigue or loss of energy; guilt or worthlessness; poor concentration or indecisiveness; recurrent thoughts of death or suicide or a suicide attempt or specific plan (DSM-IV criteria; American Psychiatric Association 1994). Its severity can range from experiencing low mood and depressive symptoms to a major depressive episode.

Prevalence

The percentage of people with depression is higher in the older age group than any other age group and it is the most common mental health disorder in older people (Age Concern and Mental Health Foundation 2006). The female to male ratio regarding depression is 70:30 and it is more common among people who are widowed or divorced (Baldwin 2002). Between 10–15% of older people living in the community have some degree of depressive symptoms, of which an estimated 2–4% have severe depression; and the prevalence rises to 26–44% for those receiving home-care (Banerjee et al. 1996; Baldwin 2002). The highest prevalence is found in care homes, with up to 40% of residents estimated to have depressive symptoms, although it is often not recognized and therefore not treated (Bagley et al. 2000).

Risk Factors

This higher percentage occurs in old age as people become more vulnerable to risk factors such as being widowed or divorced, experiencing physical ill-health or disability, lacking social support, being lonely and isolated, being retired or unemployed, and having a history of depression. Older people may also develop depression due to genetic susceptibility (which increases with age), neurobiological changes associated with ageing, or medication prescribed for other conditions. Major life events such as bereavement, separation, acute illness, moving to an institution, major financial crisis, negative interactions with family, loss of ‘significant other’ (including a pet) or caring for a family member (Baldwin 2002) can also trigger depression. Depression in older adults is associated with increased risk of death, disability and suicide.

Presentation

Depression is diagnosed using the same criteria as for younger adults. However, the presentation in older people often differs and is therefore not always recognized or treated. Older people are more likely to present with somatic symptoms such as loss of appetite or fatigue that may be falsely attributed to a co-existing medical condition, or just put down to ‘old age’. Older people may minimize any feelings of sadness they have, being a generation not used to ‘bothering’ their doctor about how they feel. If left untreated, a person’s behaviour can resemble that of someone with dementia. This is sometimes referred to as pseudodementia. It is vital to differentiate between depression and dementia in order to offer the appropriate management. The onset of depression can usually be pinpointed to a specific date, whereas the onset of dementia is much more insidious. Depression and dementia can also co-exist.

Alcohol Abuse in Older People

Approximately one in six older men and one in 15 older women drink alcohol at a potentially harmful level. Alcohol abuse can be precipitated by many of the same risk factors as for depression: bereavement, loss and loneliness; physical ill health, disability, pain and increasing dependence; and is more likely to go undetected among older people. Between 10–30% of older people who abuse alcohol become depressed and are then at greater risk of suicide.

Diagnosis

To understand what is affecting a person, so as to avoid any errors, a detailed history should be obtained from the person and family and should cover major adverse life events, previous coping strategies and personality traits, and drug and alcohol usage. Blood tests are taken to identify physical conditions that may resemble depression such as hypothyroidism, or any deficiencies that commonly occur in people who are depressed, such as folate levels, which may fall due to malnutrition caused by appetite loss. A screening assessment tool will also be used. Those commonly used with working age adults do not necessarily have validity and reliability for use with older people, so the most frequently used tools with this age group are:

■ The Geriatric Depression Scale (GDS-15) (Yesavage et al. 1983). This is self-rated with 15 questions requiring a yes or no answer. Scores above 5 indicate depression

■ Hospital Anxiety and Depression Scale (HADS) (Zigmond and Snaith 1983). This is self-rating on two subscales that measure anxiety and depressive symptoms over the preceding week. Scores above 8 indicate depression

■ Cornell Scale for Depression in Dementia (Alexopoulos et al. 1988). This is specifically designed for use in dementia and completed through an interview with the person themselves and/or a carer, depending on the severity of dementia. Scores above 8 indicate depression.

Intervention

The most commonly used medical intervention is a selective serotonin re-uptake inhibitor (SSRI). Although tricyclic antidepressants are equally effective, they also have more side-effects and are therefore less well tolerated (Mottram et al. 2006). Psychological therapies such as cognitive behavioural therapy have been shown to be equally effective in older and younger adults with depression (Cuijpers et al. 2009a) but are not always offered (Rodda et al. 2011). A combination of pharmacological and psychological therapies has been shown to be more effective than psychological therapy alone for older people (Cuijpers et al. 2009b). Physical exercise has been shown to be effective to improve depressive symptoms in older people (Mather et al. 2002) and people with dementia who exercise are less likely to be depressed (Regan et al. 2005).

Impact on Occupational Performance

Depression can affect people’s motivation and ability to initiate or carry out activity. Someone who is depressed may lack concentration and confidence in their abilities, and find it difficult to make choices. Lack of appetite and changed sleep patterns can result in low energy, slowness and generalized aches and pains. People may become uninterested in, or neglect, their appearance. Feelings of anxiety can lead to agitation, wandering and behaviour that carers can find difficult to cope with. It is difficult to say categorically whether it is a lack of activity that leads to depression, or being depressed reduces participation. It is probably a combination of both. Where an older person experiences lowered mood precipitated by other risk factors, such as poor physical health or bereavement, this is likely to lead to reduced opportunities to participate in personally meaningful activities. The risk of depression can be reduced by taking regular exercise, planning for major life transitions such as retirement, seeking support when bereaved, maintaining activities and social involvement.

Occupational Therapy

Bearing in mind the link between participation in activities and maintaining mental wellbeing, occupational therapists have an important role in the detection and management of later life depression. The primary aim of occupational therapy intervention is to enable the older person to engage in valued daily occupations and roles. Occupational therapists use many of the interventions outlined previously, ideally with an occupational emphasis, and incorporating the following principles:

■ Encouraging an individual to attempt activity

■ Using familiar activities to increase self-confidence

■ Using personally meaningful activities to increase motivation and self-confidence

■ Limiting the number of choices to be made

■ Enhancing self-confidence through self-care activities, such as hairdressing or manicures

■ Providing reassurance and opportunities to wander safely to reduce agitation

■ Encouraging people who are fatigued to do ‘little and often’

■ Setting short term, realistically achievable goals

■ Using activities that quickly provide a successful, end result for positive reinforcement

■ Providing opportunities for social interaction for those who have withdrawn or become isolated due to anxiety or bereavement.

DEMENTIA

Dementia is a clinical syndrome characterized by global cognitive impairment, which represents a decline from previous level of functioning, and is associated with impairment in functional abilities, and in many cases, behavioural and psychiatric disturbance.

(NICE and SCIE 2006, p. 43)

Causes

There are many causes of dementia with the most common in older people being Alzheimer’s disease, which changes the chemistry and structure of the brain and accounts for approximately 60% of cases. Vascular dementia results from poor oxygen supply to the brain and, together with those who have vascular and Alzheimer’s mixed, accounts for approximately 30% of cases. Dementia with Lewy bodies, caused by protein being deposited within nerve cells, shares features of Parkinson’s disease, such as slowness of movement, and accounts for 4% of cases. Other, rarer causes of dementia include frontotemporal dementia, HIV/AIDS, Huntington’s disease, Creutzfeldt-Jakob disease, Korsakoff syndrome and Pick’s disease. Early onset dementia refers to an onset before the age of 65 and late onset applies to an onset at 65 years or older. The presentation and progression of dementia varies from individual to individual, partly due to the underlying pathology, but also influenced by the person’s own personality and their unique combination of practical and emotional support networks. What is common is its progressive nature.

Prevalence

The prevalence of dementia increases with age, doubling every 5 years from the age of 65 (Knapp et al. 2007). Hence 1 in 20 people aged 65 and over will have dementia, rising to one in five people aged 80 and over. The number of people with dementia is rising worldwide and is due to double every 20 years, to a total of 81.1 million by 2040 (Ferri et al. 2005). In the UK, approximately 800,000 people have dementia; two-thirds of whom live in the community, of which half live alone and are supported by approximately 670,000 family members (Department of Health 2012; Knapp et al. 2007).

Impact on Occupational Performance

A person with dementia can find it increasingly difficult to remember things, know where they are, recognise other people, keep track of time, organize themselves, understand what is being said to them, communicate with other people, make decisions, and learn new things. As a result, the person will experience increasing difficulty in carrying out everyday tasks. The need to engage in activity is intrinsic to all human beings and people with dementia are no exception, but they increasingly need the help of care-givers, be they family and friends (informal, unpaid) or health and social care staff (formal, paid), in order to do this (Kitwood 1997). As the person with dementia loses their skills, abilities and former roles, their carers often experience a feeling of increased burden and stress, which can impact on their own occupational opportunities and performance.

Neuropsychiatric or behavioural and psychological symptoms of dementia (BPSD), such as disturbed perception, thought content, or mood; or challenging behaviour, such as physical or verbal aggression, occur in approximately one-third of people with mild dementia, in two-thirds of those with more severe impairment. These problems are known to contribute to increased care-giver burden, institutionalization and decreased quality of life for the person themselves and their carers (Livingston et al. 2005).

Diagnosis

Currently in the UK, about half of people who have dementia never receive a formal diagnosis (Department of Health 2012) or it comes comparatively late, once crisis point has been reached. There is now an emphasis on early diagnosis, to enable people with dementia and their family to access support services and make informed choices to plan accordingly for the future. The establishment of dedicated Memory Services within community mental health services enables early diagnosis by specialist interprofessional teams, often including occupational therapists.

The diagnosis process includes obtaining a history, physical examination and investigations and use of a cognitive screening assessment. The Mini Mental State Examination (MMSE) (Folstein et al. 1975) is a well-known screening tool that has long been in frequent clinical and research use. It has the advantage of being quick and easy to administer but concerns about its validity with people with visual or language impairment, or those with low intellectual ability or poor literacy skills, or with non-English speakers have been raised. More recently, due to copyright issues and the potential cost of purchasing the necessary licence to continue using this tool, other options are being explored, such as the Addenbrooke’s Cognitive Examination-III (ACE-III) (NeuRA 2012) and the Montreal Cognitive Assessment (MoCA) (Nasreddine et al. 2005). Impact on function and activities of daily living (ADL) will also be screened, possibly using an ADL scale, such as the Bristol Activities of Daily Living Scale (BADLS) (Bucks et al. 1996), which was developed specifically for use with community dwelling people with dementia and has been shown to be sensitive to change over time (Byrne et al. 2000). It is a carer rated scale comprising 20 personal care and instrumental daily living activities. An overall score of 0 indicates independence in all areas, while higher scores, up to a maximum of 60, indicate higher dependency.

Person-Centred Care

Kitwood (1997) first described the concept of person-centred care for people with dementia. Person-centred care is described as ‘V + I + P + S’, where V refers to valuing people with dementia, I refers to treating them as individuals, P refers to trying to understand their personal perspective, and S refers to supportive social psychology. VIPS also stands for ‘very important persons’, which – as a portrayal of the endpoint service user – is perhaps a simpler way of understanding the essence of person-centred care (Brooker 2007). Kitwood’s Enriched Model of Dementia described the experience of living with dementia as a combination of five factors, represented by the mnemonic ‘D = NI + H + B + P + SP’; where D = Dementia, NI = Neurological Impairment, H = Health and physical fitness, B = Biography/life history, P = Personality and SP = Social Psychology (Brooker 2007). Personality and biography cannot be changed – what has happened in the past cannot be altered – but greater knowledge about these factors informs assessment and planning. The nature of neurological impairment varies from individual to individual, depending on the type and rate of progression of the underlying disease, and there is ongoing debate about the degree to which this damage can be reversed. Carers therefore need to enhance wellbeing through promoting and maintaining physical health, and improving the social and psychological context within which the person lives.

Dementia Care Mapping (DCM) evaluates the quality of person-centred care. A ‘mapper’ observes six people simultaneously over a 6-hour period. The nature of activity being engaged in, and their perceived degree of wellbeing, is noted every 5 minutes. Wellbeing scores are produced for each individual, plus examples of positive (‘uplifts’) and negative (‘putdowns’) interactions between staff and service users. These data are used to inform and train staff to recognize and understand peoples’ behaviour and thereby improve care planning and provision.

Interventions

A range of activity-based interventions have been demonstrated to be effective for people with dementia, and are recommended as good practice (NICE and SCIE 2006). For cognitive symptoms these include cognitive stimulation therapy, and for non-cognitive symptoms, or challenging behaviour, these include ‘interventions tailored to the person’s preferences, skills and abilities’ (NICE/SCIE p. 28) – such as multi-sensory stimulation, the therapeutic use of music and/or dancing, animal-assisted therapy, and massage. For people with dementia who are also depressed and/or anxious recommendations include physical exercise and sensory stimulation therapies (such as reminiscence therapy, multi-sensory stimulation, and animal-assisted therapy). Occupational therapists use many of these interventions, which can be presented with a focus on occupational engagement. Two are briefly discussed here.

Cognitive Stimulation Therapy

Cognitive stimulation therapy (CST) incorporates principles of reality orientation, reminiscence, validation and person-centred care. The 7-week programme comprises fourteen 45-minute sessions, each related to a particular theme, such as sound, childhood or using money. The emphasis is on information processing, and props are used to provide multisensory stimulation. A multicentre, randomized controlled trial was conducted with 210 participants across 18 care homes and five day centres. The intervention group experienced significant improvement in cognition, and improved quality of life, but there was no difference between the groups for depression, anxiety, behaviour and communication (Spector et al. 2008).

Multisensory Stimulation

All people need sensory stimulation to interpret and interact with their environment and sensory impairment or deprivation eventually results in physical and/or social disengagement. Sensory impairment can occur as part of normal ageing or due to conditions such as dementia and alters our sensory experience. People in institutional care may experience sensory deprivation through a lack of environmental stimulation and sensory opportunities. A sensory approach aims to maintain interaction with the environment and other people by providing a range of experiences to stimulate all the senses – smell, movement, touch, vision, hearing and taste – even if verbal communication is no longer possible.

The use of specialist multisensory rooms or environments (MSE) originated in The Netherlands with the development of Snoezelen©, which literally translated, means ‘to sniff and doze’. Beneficial effects immediately after using such rooms have been noted (Livingston et al. 2005). Staff must be trained and users must be assessed in order to establish an agreed intervention plan. This ensures an appropriate level and type of stimulation is provided and avoids the dangers of sensory overload. However, a dedicated specialist room is not always necessary as many of the principles can be applied more generally. For example, using scented bath oils, background music and environmental props can turn a functional bath into a sensory experience. A range of sensory stimuli can be incorporated into the environment or used as an activity, such as rummage bags, sensory cushions and aprons, and these have been shown to effectively reduce challenging behaviour and depression in people with more advanced dementia (Verkaik et al. 2005). Interventions such as animal-assisted therapy (Morrison 2007) and using dolls and soft toys (James et al. 2006; Mackenzie et al. 2006) are additional elements that contribute to a sensory approach. Animal-assisted interventions are covered more fully in Ch. 20 in relation to green care.

Life Story Work

It is important to know the individual’s life story (Kitwood 1997). Ideally, the person with dementia will be involved in relating their own life story but it is often left to carers to do this on their behalf at a later stage. Benefits include enabling staff to know and better understand the individual person and their behaviour, informing the care planning process, providing personalized care, ensuring continuity of care, and encouraging life review and reminiscence. It is potentially an activity that the individual, their family and staff can enjoy doing together, but it can also be an emotional activity that may need sensitive handling. Ensuring confidentiality is important as life story folders may contain personal information which the person or their relatives do not want to share with others.

Different formats of life story folders can be produced or purchased. It is a good idea to include a family tree, a list of significant dates, photographs and a frontispiece of current information about their home, family, likes and dislikes, emphasizing the more positive aspects. A memory box can also be created to contain objects of significance to represent the person’s life. Increasingly, creative presentations are now possible utilizing technology such as digital picture frames. See www.lifestorynetwork.org.uk for more details about this. Also see Chapter 17, where storytelling is used as an example of creative activity and Chapter 20, which discusses personal narratives.

OCCUPATIONAL THERAPY AND OLDER PEOPLE

This section of the chapter describes occupational therapy assessment of older people and the most commonly used assessment tools. It outlines the Developmental Model (Perrin et al. 2008) as an underpinning of practice and illustrates the potential role of occupational therapy in community-based dementia care and in care homes, drawing on the profession’s developing evidence base in these areas. It also discusses issues such as mental capacity, assessing and managing risk and working with carers.

Occupational Therapy Assessment of Older People

Assessment has to be timely – not whilst the person is psychologically unstable, but in sufficient time to allow for future planning. Assessment should be carried out at a realistic time of day, related to the person’s normal routine. For example, carrying out personal care tasks in the morning if that is when the person usually washes and dresses. Performance can fluctuate at certain times of the day, possibly due to the condition itself, or caused by medication.

Peoples’ homes are the most realistic venue for assessment and intervention. It provides a fuller picture and the occupational therapist may identify significant factors that have previously gone unnoticed by the individual, for example, potential fall hazards. Equipment can be installed, demonstrated and practised with in situ, and with the carer if needed. Most importantly, older people perform instrumental ADL significantly better in their own home (Park et al. 1994), including people with dementia (Tullis and Nicol 1999).

The aspects most commonly considered when assessing an older person include:

■ Communication: What is the person’s preferred form of address? What is their first language? What verbal and non-verbal methods of communication are used? Are there any speech or language impairments?

■ Sensory issues: This includes smell, movement, touch, vision, hearing and taste. Does the client usually wear a hearing aid and/or glasses? Are these available for use at the time of assessment?

■ Orientation to time, place and person: Does the person know the time of day, the day and date; where they are; who they and others are?

■ Cognition: Areas to consider here include short- and long-term memory, concentration, visual-spatial awareness, sequencing and problem-solving abilities

■ Mood: Does the person currently enjoy wellbeing, or not? Are they happy, relaxed, cheerful, realistic or sad, anxious, fearful?

■ Mobility: Can the person mobilize indoors and outside? Can they use stairs? Do they need to use mobility aids?

■ Transfers: Can the person transfer from their bed/chair/toilet/bath/shower? It is also important to note the height, type and layout of furniture

■ Personal care tasks: Does the person have any problems with eating/drinking/washing/dressing/grooming/using the toilet?

■ Domestic activities: Does the person have any problems with cooking/cleaning/shopping/laundry?

■ Occupation: Does the person have any problems with self-care/work/leisure activities?

■ Daily routine: Go through a daily/weekly timetable to highlight ‘gaps’ in service provision, occupational opportunities and social interaction

■ Physical environment: Consider accommodation, access, layout, facilities, lighting, flooring, heating, and communication; both standard and in emergencies.

■ Potential hazards and safety issues

■ Driving

■ Equipment already provided/needed, including assistive technology

■ Social environment: Consider other household members (including pets) and any support/social networks that are available.

Obviously, consideration must be given to co-existing physical and/or sensory impairment(s) within the occupational therapy process but these are beyond the remit of this chapter. See Ch. 5 for a specific discussion about assessment and outcome measurement.

Occupational Therapy Assessment Tools

Many occupational therapists working with older people base their practice on the Model of Human Occupation (MOHO) (Kielhofner 2008) and use a range of MOHO-based assessments, including the:

■ Model of Human Occupation Screening Tool (MOHOST) (Parkinson et al. 2006)

■ Occupational Performance History Interview (OPHI-II) (Kielhofner et al. 2004)

■ Volitional Questionnaire (VQ) (de las Heras et al. 1998)

■ Assessment of Motor and Process Skills (AMPS) (Fisher 2003, 2006).

The AMPS is suitable for use with anyone, of any age, who experiences, or is at risk of experiencing, challenges with ADL task performance, and is sensitive to the smallest change in this. It has been shown as reliable and valid for use with older people with dementia living in the community (Robinson and Fisher 1996) but it is not suitable for people who are unable to participate in the initial interview, activity selection and contract setting that is required before the two task assessments take place. It may, therefore, not be suitable for someone with more severe dementia.

Other assessments commonly used with older people include:

■ The Canadian Occupational Performance Measure (COPM). Based on the Canadian Model of Occupational Performance and Engagement (CMOP-E) (Townsend and Polatajko 2007), the COPM (Law et al. 2005) uses a semi-structured interview to measure the individual’s own perception of their occupational performance. It can be used with the individual and/or the carer, in which case the carer reports their own perspective and does not attempt to second guess the response of the person they care for.

■ Large Allen Cognitive Level Screen (LACLS) The LACLS uses a simple task, leather lacing, as a screening test. Interpretation using the Allen Cognitive Scale of levels and modes of performance (Allen 1999) determines the level of cognitive disability which enables the provision of appropriate environmental support and intervention. It originates from the Cognitive Disability Model (Allen et al. 1992). The Allen Cognitive Level Screen was assessed as being appropriate to use with people with dementia (Wilson et al. 1989) and a further study established the validity of an enlarged version (the LACLS) designed for use with older people with impaired visual or manual dexterity (Kehrberg et al. 1992).

■ Pool Activity Level (PAL) The PAL instrument (Pool 2012) was developed as a practical resource for carers of people with dementia to identify and capitalize on the person’s abilities in order to enable their engagement in meaningful occupation while also providing the necessary assistance to meet their needs. Pool, an occupational therapist, used underpinning theory from the Cognitive Disability Model (Allen et al. 1992). The instrument comprises:

■ A life history profile

■ A checklist

■ Activity profiles

■ An individual action plan for personal care activities.

The PAL Checklist covers nine everyday activities and the results indicate the level of cognitive ability that an individual has reached in terms of being able to engage in the activity, be that at the Planned, Exploratory, Sensory or Reflex level. The PAL activity profiles outline the likely abilities and limitations of a person at that level and provide guidance on how best to engage and enable an individual. The PAL Checklist has validity and reliability when used to assess older people with dementia (Wenborn et al. 2008). Widely used throughout the UK, it is recommended as an instrument to guide providers of daily living and leisure activities (NICE and SCIE 2006). Although designed for care-giver’s use, it is usually occupational therapists that introduce it into services and oversee its implementation in practice.

OCCUPATIONAL THERAPY AND PEOPLE WITH DEMENTIA

Occupational therapists have a key role in enabling people with dementia to engage in personally meaningful occupations and advice and skills training from an occupational therapist to help maintain independence is recommended (NICE and SCIE 2006). In the UK, the latest (currently optional) module added to the Memory Services National Accreditation Programme (MSNAP) Standards (Royal College of Psychiatrists 2012) relates to the use of psychosocial interventions and includes a recommendation that ‘People have access to personally tailored occupational therapy to assist them with their occupational and functional needs and to help maintain their health and wellbeing, independence and community living’ (Standard 6.4.1). Standard 6.4.2 further recommends that ‘The memory service has access to advice and support on assistive technology and telecare solutions’. The occupational therapy profession’s philosophy fits well with the principles of person-centred care. More specifically, many occupational therapists use the Developmental Model to inform and guide their practice, as described by Perrin et al. (2008).

Developmental Model of Dementia

Underpinned by the work of Jean Piaget, who developed a theory of childhood cognitive development, and the Cognitive Disability Model (Allen et al. 1992), the Developmental, Model is based on the theory that the progressive cognitive changes experienced by a person with dementia mirror the cognitive development stages experienced by children in reverse order, as opposed to reverting to childhood as is often suggested. There are four stages (Perrin et al. 2008):

■ Reflective (early stage)

■ Symbolic (early to middle stage)

■ Sensorimotor (middle to late stage)

■ Reflex (late stage).

Cognitive changes experienced at each stage affect a person’s ability to relate to the world and others, to think and to do. The main goal of occupational therapy intervention is to enable the person to engage with the world and others – regardless of their level of cognitive impairment – and so appropriate activities have to be selected and presented by occupational therapists in a way to enable optimal engagement.

Community Occupational Therapy in Dementia

The community occupational therapy in dementia (COTiD) programme for older people with mild to moderate dementia and their carers was developed and evaluated in the Netherlands (Graff et al. 2006). The intervention aims to improve the service user’s ability to carry out ADL, improve the carer’s supervision and problem-solving skills so as to increase their own sense of competence and decrease their burden of care, and improve the quality of life for both parties. The COTiD programme comprises ten 1-hour sessions of home-based occupational therapy provided over 5 weeks, with the occupational therapist working in partnership with the person who has dementia and their family carer. A randomized controlled trial (RCT) was conducted with 135 people and their family caregivers. The primary outcomes were that the person with dementia’s ability to perform ADL was enhanced, as was the carer’s sense of competence. Secondary outcomes were enhanced quality of life, mood and general health status for both parties and carers’ sense of control over their life. All scores improved significantly relative to baseline in the intervention group compared with the controls (Graff et al. 2006, 2007). The effect sizes of all primary outcomes were higher than those found in trials of medications or other psychosocial interventions, and were still present at 3 months (Graff et al. 2006). The intervention was also found to be cost-effective in reducing usage of health and social care services (Graff et al. 2008).

A subsequent study in Germany (Voigt-Radloff et al. 2011) found no difference between providing COTiD or a single occupational therapy consultation. This highlights the need to adapt complex interventions before implementation and evaluation in other nations. For example, COTiD appears to have potential for adoption in the UK but, bearing in mind the need for such cultural adaptation, a research programme is now underway to translate and adapt the COTiD intervention to maximize its suitability and usefulness within the UK setting before running a RCT, and subsequently an implementation study (see www.ucl.ac.uk/valid for more details).

OCCUPATIONAL THERAPY IN CARE HOMES

As the numbers of older people and people with dementia increase, so too does the population of people residing in care homes. Three-quarters of all care home residents have some degree of cognitive impairment (Macdonald et al. 2002), approximately 40% are depressed, and about a quarter have both dementia and depression (Mozley et al. 2000). Activity participation in care homes has been shown to improve residents’ quality of life (Zimmerman et al. 2005), reduce levels of challenging behaviour and improve mood and function (Cohen-Mansfield 2005). The need to enable activity participation suggests a potential role for occupational therapy in care homes and two studies have sought to evaluate its effectiveness. The Care Home Activity Project (Mozley et al. 2007) tested the effectiveness of an occupational therapist working within a care home to increase participation in one-to-one and group activities, and to reduce the severity of depression. Wenborn et al. (2013) evaluated the effectiveness of an occupational therapist-led programme to train and coach care home staff to increase activity provision to improve quality of life for residents with dementia. Neither study produced quantitative evidence for the efficacy of the intervention, but both produced qualitative findings that suggested residents who did receive enhanced occupational opportunities had a positive experience. These studies illustrate the challenges in evaluating complex interventions, such as occupational therapy, in the real life setting of care homes, not least of these being the difficulties related to management and staff co-operation with the interventions. They also highlight the need to develop outcome measures that more effectively measure the focus of the intervention, such as level of engagement and activity, especially for those residents with more severe dementia.

Occupational therapists certainly have a role within care homes, not only to facilitate activity participation, but also to enable residents to live as independently as possible. This can be done through the provision of rehabilitation and re-enablement programmes and specialist equipment to enhance function and/or maintain safety and comfort. This may include hoists, specialist seating and splinting. These latter aspects become increasingly important as the person nears the end of their life, and can be provided not only within residential settings but also to people still living at home.

OCCUPATIONAL THERAPY PRACTICE

As well as the specific issues associated with working with older people with depression or older people with dementia, there are some general points for occupational therapists to consider when working with older people. These concern mental capacity, assessing and managing risk, assistive technology and working with carers.

Mental Capacity

There will be instances when older people, particularly those with dementia, do not have the capacity to make and/or to communicate decisions regarding occupational therapy assessment and interventions. In the UK it is vital to be aware of the Mental Capacity Act (2005) and its implications for practice (see also Ch. 9). It has five statutory principles:

1. A person must be assumed to have capacity unless it is established that they do not.

2. A person is not to be treated as unable to make a decision unless all practicable steps to help him/her do so have been taken without success.

3. A person is not to be treated as unable to make a decision merely because they make an unwise decision.

4. A decision made, under this Act for, or on behalf of, a person who lacks capacity must be done their best interests.

5. Before a decision is made, regard must be given as to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.

The Act outlines how to establish that someone lacks capacity:

1. Does the person have an impairment of, or a disturbance in, the functioning of, the mind or brain (temporarily or permanently)?

2. Does the impairment or disturbance mean the person is unable to make this particular decision at this particular time? Can the individual:

■ understand the information relevant to the decision?

■ retain the information for long enough to reach a decision?

■ use or weigh the information to make a decision?

■ communicate a decision?

Occupational therapists must always ask for the person’s consent before proceeding with an assessment or intervention and must re-check this on an ongoing basis. There may be occasions when a person makes a decision that the occupational therapist considers to be unwise, such as refusing the installation of equipment or provision of community services, or insisting on going home despite high levels of risk. There will be local procedures and guidance in place as to how to report, manage and document these decisions. There is further discussion about mental capacity in Ch 7 (in relation to professional accountability) and in Ch 10 (in relation to ethical practice.)

Assessing and Managing Risk

There are a number of potential risks facing older people. Depression or cognitive impairment can limit or decrease an individual’s motivation or ability to undertake daily living skills, such as maintaining personal hygiene, meal preparation, using household appliances, shopping, medication compliance and managing finances. There is also the possibility of harming themselves or others through inadvertently flooding or setting fire to their home, or by driving dangerously. People who are disorientated in time or place can wander from their home and be at risk of accidents or hypothermia. People who are depressed are at risk of suicide. Older people may also experience physical health problems, which in turn impact on their safety; for example reduced mobility, falls and infection. A person’s home environment may become unduly cluttered or require adaptation to enable safe access. Older people are also vulnerable to physical or financial abuse by others, including informal and formal carers. In this instance, occupational therapists need to follow the locally agreed Safeguarding Vulnerable Adults policy. Occupational therapists have an important role in the identification and management of risk. A validated assessment of unmet needs such as the Camberwell Assessment of Need for the Elderly (Orrell and Hancock 2004) can be used to identify and prioritize potential risks. Many organizations use their own locally developed tool.

Health and social care staff can aim to minimize the level of risk but never totally remove it. Risk may be managed through the provision of equipment, assistive technology, or support services. Re-design or adaptation of the environment, including the removal or adaptation of appliances, or to facilitate purposeful walking (as opposed to wandering) may also help.

As always, it is important to record all assessment and intervention, including any concerns about risk management recommendations made but declined by the individual. As discussed above, there is a difference between someone making what the practitioner thinks is an unwise decision and them not having the capacity to make an informed decision. In the first instance, the occupational therapist must respect their decision and do what they can to minimize the potential risk. In the latter case, any decision that the occupational therapist makes on the individual’s behalf must be in their best interest.

Assistive Technology

Assistive technology ranges from simple low-tech household devices to sophisticated sensors and computerized systems that are often connected to a call system or centre to alert a response, which is then referred to as ‘telecare’. Assistive technology has been developed to support people with dementia and their carers to manage their daily activities and to enhance safety (van der Roest et al. 2012) and includes:

■ Time-orientation devices, such as large-faced clocks and/or automated clock calendars

■ Alarm and monitoring systems to alert carers, such as fall alarms, passive alarm systems, and bed and chair monitors

■ Safety systems, such as automatic cooker switch-off, bath level/temperature monitor and control

■ Adapted telephones, and audiovisual/computer systems to facilitate social contact and occupation.

Assistive technology equipment can maintain safety, monitor and maintain health, and enhance quality of life in several ways. It can remind people, provide them with something to do, point out or respond to danger, monitor activity, restrict access and egress, and keep people in touch with each other. For example, sensors that activate when a person with dementia gets up at night and alert the carer are cost-effective in terms of preventing or delaying care home admission. They also enhance quality of life for the person with dementia (who is thus enabled to remain in their own familiar environment for longer), and reduce the psychological and physical stress experienced by the carer. Chapter 9 highlights the ethical issues surrounding the use of assistive technology and telecare with older people.

Working with Carers

Often, a range of family and friends care for older people, and occupational therapists have a key role in supporting them. Informal carers should be offered a carer’s assessment and appropriate support provided in response to identified needs. As discussed, caring for a family member is a potential risk factor for depression (Baldwin 2002). Occupational therapists have a key role in educating and training carers. This may include training in coping strategies to enable the cared for person to continue doing certain things themselves, rather than the carer doing them on their behalf. It may also include techniques for enabling activity participation, using equipment, and advising on benefits and direct payments. The COTiD intervention (described earlier) is a good example of an intervention that enables occupational therapists to engage in this educational/advisory/coaching role. Support can be provided to carers on a one-to-one or group basis. Occupational therapists also have a key role to provide training and advice to formal, paid carers on how best to enable older people to maximize function and maintain their engagement in daily activities and occupations, and how to use specialist equipment such as hoists. The role of carers is also explored in Chapter 11.

SUMMARY

This chapter has described and illustrated, using evidence-based examples, the breadth of occupational therapy practice with older people. The importance of differentiating between the impact of normal ageing and impairment due to underlying pathology, and between dementia and depression, is highlighted. Occupational therapists’ person-centred philosophy is often extended to include the older person’s family carer as well, bearing in mind the number of informal carers supporting older people and the increasing dependence that a person with dementia will inevitably have on such support. It is also important to recognize the potential risk of carers becoming depressed, hence the need to offer them support to meet their own needs as well as those of the person that they care for.

It is interesting to speculate on what the future holds for occupational therapy services for older people. The current policy focus on enabling independence, choice and control, accords well with the occupational therapy philosophy and therefore may be seen as presenting an opportunity. However, the need to develop yet more robust evidence to demonstrate the value of occupational therapy intervention is a challenge that occupational therapists must embrace. See Chapter 9 on evidence-based practice.