The needs of older people with dementia in residential care

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1 INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY Int J Geriatr Psychiatry 2006; 21: Published online 2 December 2005 in Wiley InterScience ( DOI: /gps.1421 The needs of older people with dementia in residential care Geraldine A. Hancock 1, Bob Woods 2, David Challis 3 and Martin Orrell 1 * 1 Department of Mental Health Sciences, University College London, London, UK 2 DSDC, University of Wales Bangor, Wales, UK 3 PSSRU, Mathematics Building, University of Manchester, Manchester, UK SUMMARY Background People with dementia often move into care homes as their needs become too complex or expensive for them to remain in their own homes. Little is known about how well their needs are met within care homes. Method The aim of this study was to identify the unmet needs of people with dementia in care and the characteristics associated with high levels of needs. Two hundred and thirty-eight people with dementia were recruited from residential care homes nationally. Needs were identified using the Camberwell Assessment of Needs for the Elderly (CANE). Results Residents with dementia had a mean of 4.4 (SD 2.6) unmet and 12.1 (SD 2.6) met needs. Environmental and physical health needs were usually met. However, sensory or physical disability (including mobility problems and incontinence) needs, mental health needs, and social needs, such as company and daytime activities, were often unmet. Unmet needs were associated with psychological problems, such as anxiety and depression, but not with severity of dementia or level of dependency. Conclusion Mental health services and residential home staff need to be aware that many needs remain unmet and much can be done to improve the quality of life of the residents with dementia. Copyright # 2005 John Wiley & Sons, Ltd. key words needs; elderly; residential care; CANE; assessment INTRODUCTION People with dementia living in residential care often have complex needs (Martin et al., 2002). Little information is available on the experiences of older people with dementia and how well their complex needs are met within long-term care (Lee, 2002). Some individuals in long-term care may have their needs overlooked for a variety of reasons (e.g. complexity of behaviour; Potkins et al., 2003). Individuals with dementia often have difficulty expressing their needs and this situation can lead to misunderstandings (Godlove Mozley et al., 1999; Potkins et al., 2003). *Correspondence to: Prof. M. Orrell, Department of Mental Health Sciences, University College London, Wolfson Building, Wolfson Building, 48 Riding House Street, London WIW 7EY, UK. Tel: Fax: m.orrell@ucl.ac.uk Contract/grant sponsor: Wellcome Trust. Unmet needs lead to decreased quality of life, and increased mental health problems, and dissatisfaction with services (UK 700 Group, 1999). In some cases overlooked needs may lead to situations of frustration, neglect or abuse of the older person. Questions have continued to be raised about the adequacy of community care teams (e.g. Primary Care and Community Mental Health Teams) to support residential homes in meeting the complex needs of these individuals (Department of Health, 2001a). Families state that they have frequently been left in difficult positions with little information or advice on how to cope, or how to assist their loved one in care (Audit Commission, 2000; 2002). Previous research in continuing care has highlighted that residents, can have needs for assistance that frequently go undetected and untreated (e.g. for daytime activities, behaviour, and company; Martin et al., 2002). Needs of people in residential care Received 13 December 2004 Copyright # 2005 John Wiley & Sons, Ltd. Accepted 27 June 2005

2 44 g. a. hancock ET AL. are substantially greater than for people living in sheltered accommodation (Field et al., 2004), admitted to day hospitals (Ashaye et al., 2003), or attending primary care (Walters et al., 2000). Those with dementia are more at risk and have been found to have unmet needs for extra help with depression, anxiety, or appropriate information (Janzon et al., 2000). An unmet need may be described as a situation in which an individual has significant problems for which there is an appropriate intervention which could potentially meet the need (Stevens and Gabby, 1991; Orrell and Hancock, 2004). In the UK, the National Service Framework for Older People emphasises the importance of addressing older people s needs on an individual basis (Department of Health, 2001b), taking into account the abilities and preferences of each person. In order to achieve individualised, good quality, and effective care to meet the needs of people with dementia living in residential care, a person-centred approach is required. This approach involves understanding the vulnerabilities and strengths of the resident, as well as issues relating to staff and the caring environment. Given the changing situation in residential care, however, it is presently not known what the needs of this population are or how well they are being met. The aims of this study were to assess the met and unmet needs of people with dementia in residential care homes and to investigate the relationship between needs and various clinical and demographic factors. METHOD Selection of homes A current list of residential homes was obtained from research areas for which local ethics approval had been given (i.e. Camden/Islington, North Wales, Cheshire, and North Manchester). For each region matched pairs of homes, based on size and registering body (local authority, private, voluntary), were selected. When two homes in an area could be matched an introductory letter was sent to the managers. The researcher then rung the homes and gauged their interest in participating. If the home was interested the researcher visited to discuss the study further and to identify residents that met the inclusion criteria. Inclusion criteria Inclusion of residents into the study was completed using the following procedure: 1. All residents over 60 years old who had resided permanently in the home for the past month, and had intentions of staying, were identified by the manager. 2. The researcher then used the National Institute of Social Work (NISW) Noticeable Problems checklist (Levin et al., 1989) to identify those residents who had probable or possible dementia, using discussion with the manager and case note review. 3. The list of residents with probable and possible dementia was then further screened by the researcher to ensure they had a diagnosis of dementia (DSM-IV; APA, 1994) using care home notes and clinical assessments. 4. Those with a DSM-IV diagnosis of dementia were entered into the randomisation procedure. 5. From this list, a minimum of eight participants (maximum 12) were selected at random (using random number sheets) from each home to participate in the study. Assessment measures Camberwell Assessment of Needs in Elderly (CANE; Reynolds et al., 2000). This instrument was used as the primary assessment instrument. It covers 24 areas targeting social, physical, psychological, and environmental needs. In addition, the CANE assesses two further areas concerning information and psychological needs of carers. Needs were rated as no need (no problem), met need (problem receiving suitable assessment/intervention), or unmet need (problem requiring further assessment or with no intervention or inappropriate intervention). All researchers (GH, JH, BB, CO, JB) were trained using the CANE Manual (Orrell and Hancock, 2004). The CANE was given as a structured interview to the individual, a key staff member, and a carer (close relative or friend) whenever possible. The final CANE ratings were made by the researcher and were based on all the information gathered throughout the assessment. For further information see Clifton Assessment Procedures for Elderly-Behaviour Rating Scale (CAPE-BRS; Pattie and Gilleard, 1979). This measure is designed to assess a range of behaviours and activities of daily living and gives an overall rating of dependency. The rating form was completed by staff and the researcher. Barthel Scale of Activities of Daily Living (Mahoney and Barthel, 1965). This scale provides an indication of the level of dependency from 0 (very dependent) to

3 needs of older people with dementia in residential care (independent). The Barthel scale was completed by staff or the researcher. Challenging Behaviour Scale (CBS; Moniz-Cook et al., 2001). This scale is a 25-item scale designed to measure resident behaviours (incidence, frequency, difficulty, and challenge) that staff in care homes find difficult to manage. It has been shown to have good validity and reliability and was completed by staff with assistance from the researcher. Cornell Scale for Depression in Dementia (Alexopoulos et al., 1988). This questionnaire is a 19-item questionnaire designed as a brief screening measure of depression in the elderly. The researcher made ratings on the level of depressive symptomatology after assessment of care notes, staff, resident, and carer reports, and clinical observations. Rating Anxiety In Dementia (RAID; Shankar et al., 1999). The RAID is a brief screening scale to identify and measure anxiety symptoms in people with dementia. The researcher made ratings on the level of anxiety symptoms after assessment of home notes, staff, resident, and carer reports, and clinical observations. Clinical Dementia Rating scale (CDR; Hughes et al., 1982). This provides an overall level of functioning in dementia. It was completed by the researcher, based on the information collected throughout the assessment. Mini Mental Status Examination (MMSE; Folstein et al., 1975). The MMSE is a widely used test providing a brief assessment of cognitive function (maximum score 30). It was administered to the individual with dementia using standardised instructions. Procedure The researchers entered the first available participant into the study; they then continued to assess individuals until each selected resident from a pair of residential homes had participated in the initial assessment. If a participant dropped out during the initial assessment phase another eligible resident was randomly chosen from the list to take their place. For each participant, an attempt to gain his/her informed consent was undertaken, but if unsuccessful an individual s assent (as defined by research protocol) to participate was obtained. Staff and, where available, informal carers (a family member or friend that was involved on at least a weekly basis) were informed about the study and were offered the opportunity to provide guidance as to whether they felt the resident would wish to participate. Information sheets were given to the participant (where appropriate), home staff, and to family carers, with an invitation to contact the researcher if they wished. The participating staff member was usually the individual s key worker. The participant, informal carer (where identified), and staff member were interviewed, separately, in a quiet room. An attempt was made to interview the participant first in order to gain consent/assent and to interview the person. Otherwise no particular order of interviewing was established but rather depended on accessibility of staff and the informal carer. All assessment measures were administered in accordance with written protocols constructed from original materials, where they were available. After all residents in the two homes had been assessed, a multidisciplinary team meeting was organised by the researcher to discuss unmet needs of the residents. The meetings followed an agenda run by the researcher. Each home was discussed in general and a list of global improvements to the environment, procedures within the home, management techniques, or training were made. Assessments of individual residents were summarised and unmet needs as rated by the researcher were agreed upon. Following the completed assessment and team meetings for one pair of homes, the researcher contacted an external staff member (JD) for randomisation of the homes, in relation to an intervention study (to be reported elsewhere). Twelve pairs of homes participated (five London, three Manchester, four North Wales). RESULTS There were 238 participants entered into the study, 192 (81%) females and 46 (19%) males. The average age of participants was 86.5 years (SD 7.4, range ). The average length of stay in the homes was 33.5 months (SD 30, range 1 180). The majority, 164 (82.8%) of residents were widowed, 50 (21%) were single, 13 (5.5%) were divorced and 11 (4.6%) were married. Most residents (209: 87.8%) were White/European. Only 88 (37%) residents had a diagnosis of dementia documented in their care plans. Needs The average number of needs identified was 16.5, 12.1 were met needs (SD 2.6, range 5 20) and 4.4

4 46 g. a. hancock ET AL. unmet needs (SD 2.6, range 0 13). Overall 3929 needs were identified, 2872 (73%) met and 1057 (27%) unmet. One in five people had seven or more unmet needs. Table 1 shows that 225 residents (94%) had one or more unmet need. The most common unmet needs were for stimulating daytime activities (76%) followed by psychological distress (48%) and company (41%). An example of an unmet need for daytime activity included a resident with severe dementia and physical impairment who was inappropriately offered complex daytime activities, such as bus rides and card games with no suitable alternative. Other examples of common unmet needs were: untreated depression or anxiety (psychological distress); residents who said they were often lonely and had no one to talk with (company); or frequent disorientation with concomitant distress within the home (memory). A common example of unmet needs for eyesight/hearing was residents who needed reassessment of their corrective aids. Almost all residents required and were receiving adequate assistance (met needs) with looking after the home, accommodation, self-care, food, and money. Younger residents (r ¼ 0.16, p < 0.05) and people who had resided in the home for a shorter period of time (r ¼ 0.15, p < 0.05) had more unmet needs. Table 1. sample Frequency (%) of CANE met and unmet needs for entire (n ¼ 238) Met need (%) Unmet need (%) Accommodation 223 (93.7) 15 (6.3) Household activities 236 (99.2) 2 (0.8) Food 207 (87) 31 (13) Self-care 222 (93.3) 10 (4.2) Caring for another 8 (3.4) 5 (2.1) Daytime activities 52 (21.8) 181 (76.1) Memory 141 (59.2) 93 (39.1) Eyesight/hearing 122 (51.3) 93 (39.1) Mobility 148 (62.2) 60 (25.2) Continence 140 (58.8) 57 (23.9) Physical health 185 (77.7) 39 (16.4) Drugs 160 (67.2) 62 (26.1) Psychotic symptoms 24 (10.1) 26 (10.9) Psychological distress 87 (36.6) 114 (47.9) Information 98 (41.2) 30 (12.6) Deliberate self-harm 16 (6.7) 3 (1.3) Accidental self-harm 110 (46.2) 29 (12.2) Abuse/neglect 59 (24.8) 7 (2.9) Behaviour 70 (29.4) 64 (26.9) Alcohol 18 (7.6) 1 (0.4) Company 105 (44.1) 97 (40.8) Intimate relationships 109 (45.8) 28 (11.8) Money 216 (90.8) 7 (2.9) Benefits 116 (48.7) 3 (1.3) Mean (SD) 12.1 (2.6) 4.4 (2.6) Needs, depression and anxiety The average score on the Cornell was 5.78 (SD 4.96, range 0 24), and 56 (23.5 %) residents scoring above the cut-off of 8 or more (M ¼ 13.16, SD 3.76), indicating clinical depression. People with clinical depression had a mean of 6.0 (SD 2.4) unmet needs compared to a mean of 4.0 (SD 2.5) for those without depression (t(236) ¼ 5.52, p < 0.001). The most common unmet needs for people with depression were daytime activities (84%), psychological distress (71%), company (70%), memory (45%), and communication problems (41%). The average score on the RAID was 6.10 (SD 6.04, range 0 34), and 39 (16.4%) scored 11 or more indicating clinical anxiety (M ¼ 17.36, SD 4.89). People with clinical anxiety had a mean of 6.0 (SD 2.6) unmet needs compared to a mean of 4.0 (SD 2.5) for those without anxiety (t(236) ¼ 4.2, p < 0.001). People with anxiety had unmet needs for daytime activities (90%), psychological distress (70%), company (70%), memory (51%), and communication problems (41%). Of the 39 residents scoring above the cut-off for anxiety 33 (85%) also had clinical depression. Needs, functional dependency, and behaviour The average score on the Barthel was (SD 18.47, range ) and the average score on the CAPE-BRS was (SD 5.22, range 2 32), demonstrating high levels of functional dependency. The Barthel score did not correlate with number of met or unmet needs, but higher CAPE-BRS scores significantly correlated with both higher numbers of total needs (met and unmet) (r ¼ 0.27, p < 0.001), and higher unmet needs (r ¼ 0.13, p < 0.05). Mean CBS-Challenge score was (SD 30.24, range 0 214). Of all participants, 49 (21%) were classified as having mild challenging behaviour, 76 (32%) had mild/moderate, 48 (20%) moderate, and 48 (20%) had severe challenging behaviour. A higher score on the CBS was positively correlated with higher total needs identified (r ¼ 0.19, p < 0.01) and higher unmet needs (r ¼ 0.22, p < 0.01). Therefore, residents with more unmet needs also had more challenging behaviours, that staff felt were difficult to manage within the home. Interestingly, in the breakdown of the CBS, greater unmet needs were also correlated to increased incidence (r ¼ 0.32, p < 0.001), frequency (r ¼ 0.25, p < 0.001), and difficulty (r ¼ 0.25, p < 0.001) of managing challenging behaviour within the home.

5 needs of older people with dementia in residential care 47 Needs and severity of dementia A total of 186 participants (78%), completed the MMSE (M ¼ 8.69, SD 7.77, range 0 26). 108 (45%) scored between 0 and 10 indicating severe dementia, 64 (27%) scored between 11 and 20 indicating moderate dementia, and 14 (6%) participants scored 21 to 26 indicating mild dementia. All participants were assessed on the CDR, 71 (30%) participants scored 3 or more indicating severe dementia, 94 (40%) scored 2 indicating moderate dementia and 73 (31%) scored 1 or less, indicating mild dementia. One-way ANOVAs were conducted on both the CDR (< ¼ 1 mild, 2 ¼ moderate, 3 ¼ severe) and the MMSE (30 21 mild, moderate, 0 10 severe). Severity of dementia was not significantly associated with frequency of met or unmet needs on the CANE. Key predictors of unmet needs A multiple linear regression analysis was undertaken to determine which factors were the best predictors of unmet needs. Total unmet need was used as the dependent variable, Barthel, CAPE-BRS, Cornell, RAID, CBS-Challenge, MMSE, and CDR were the multiple independent variables. Any missing scales were excluded pair-wise. This model accounted for 46% of the variance (F ¼ 5.34, p < 0.001; adjusted R 2 ¼ 0.18). Unmet needs were significantly predicted by the Cornell score (Beta ¼ 0.32, p < 0.05) only. The same model with MMSE and CDR removed accounted for 45% of the variance (F ¼ 8.10, p < 0.001; adjusted R 2 ¼ 0.18). Again unmet needs were associated with Cornell (Beta ¼ 0.32, p < 0.05), but also with Age (Beta ¼ 0.13, p < 0.05), and fewer months in home (Beta ¼ 0.15, p < 0.05). DISCUSSION In this study, residents with dementia had multiple needs, most of which were met by the care home, local services, or the person s social network. However, residents still had numerous unmet needs, most commonly for stimulating daytime activities or company. Other unmet needs included needs for assistance with memory problems and help with eyesight or hearing. This study confirms earlier concerns that a large percentage of people with dementia in residential care are often not getting the right type of assistance to meet their needs (Audit Commission, 2002). Unmet needs were associated with increased behavioural problems, but not with dementia severity or residents level of physical dependency. Unmet needs were associated with younger age and having resided in the care home for a shorter period of time. The rate of unmet needs was related to an individual s level of depression and anxiety, which was often co-morbid. In fact, some 85% of people with anxiety also had significant symptoms of depression. Mann et al. (2000) have suggested that lack of recognition of physical health needs in residential care is related to high levels of depression, and our findings confirm that depression is related to multiple unmet needs. This highlights the need for better management of mood disorders in care homes. Screening care home residents (with dementia) for depression using a scale such as the Cornell would identify many people with clinical depression and many people with multiple unmet needs. This could help identify those residents most in need for targeted intervention programmes to improve the wellbeing of care home residents with dementia. Homes seem to be better at meeting largely physical and environmental needs, such as food, appropriate (warm, good size, adequate facilities) accommodation, access to physical health care, help with giving medications, help with household tasks, and protection against safety risks. It appears that while homes can provide for many needs, individuals who appeared to have more complex profiles often had unmet needs. The number of unmet needs in this sample of people with dementia is greater than that found in other residential care studies (M ¼ 2.5, Martin et al., 2002), and other settings such as sheltered housing (M ¼ 1.9, Field et al., 2004), primary care (M ¼ 1.9, Walters et al., 2000), or new admissions to day hospitals (M ¼ 3.5, Ashaye et al., 2003). This high prevalence of unmet needs in residential care coincides with increases in the rates of other problems, such as depression, anxiety, dementia, physical dependence, and behavioural problems, compared to the prevalence found in other settings (Godlove Mozley et al., 2000). There are a number of potential limitations to this study. Whilst the use of the NISW checklist was an efficient way of identifying individuals who were likely to have dementia, it may have missed some people, who had less severe problems (and perhaps fewer unmet needs) and had not been recognised by the staff as having cognitive impairment. This may have resulted in a study population which had an under representation of mild dementia compared to the overall care home population. However, many people identified by this study as having dementia

6 48 g. a. hancock ET AL. KEY POINTS * Little is known about the unmet needs of people with dementia in residential care homes * The most common unmet needs were for daytime activities, sensory problems, psychological distress, memory problems and lack of company. * The multivariate analysis found that depression was significantly associated with higher rates of unmet needs had not been previously diagnosed. It is unclear whether the high numbers of unmet needs identified in this study were due to under-recognition of needs within the home or were due to a perceived inability to undertake suitable interventions. It is acknowledged that this study is cross-sectional in nature and therefore the results point to relations between variables but cannot imply causation. Due to the definition of unmet need being linked to an appropriate intervention, for all unmet needs identified in this study, the researcher could identify suitable interventions, which could have the potential of meeting the need. Although there may have been some variation between the researchers in the ratings of needs, training was conducted with all researchers to ensure all raters were crosschecking their ratings, and the study coordinator also made visits to the sites and crosschecked the researchers assessments. It is thought that individuals with dementia enter care because support for their complex needs can no longer be provided in the community. The number of individuals with dementia requiring 24 hour assisted living (residential care) is substantial (MacDonald et al., 2002). This study demonstrates that those caring for these individuals need appropriate training and support in order to be able to identify and meet the more complex individual needs required by these people and treatment of depression and provision of daytime activities would be a good starting point. This study shows that this system of care needs to be thorough and flexible in order to meet the unique profile of needs presented by each individual older person with dementia. ACKNOWLEDGEMENTS We would like to thank the Wellcome Trust for funding this research. We would also like to thank Dr Gill Livingston and Prof Martin Knapp for their contribution to the study. Juanita Hoe, Claire O Donoghue, Bridie Bains and Joanne Baker for help with collecting the data, Janice Dickson for administering the randomisation of the home pairs, and the residents, staff, and families of residential homes we visited. 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