INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY
Int J Geriatr Psychiatry 2006; 21: 43–49.
Published online 2 December 2005 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/gps.1421
The needs of older people with dementia
in residential care
Geraldine A. Hancock1, Bob Woods2, David Challis3 and Martin Orrell1*
1
Department of Mental Health Sciences, University College London, London, UK
DSDC, University of Wales Bangor, Wales, UK
3
PSSRU, Mathematics Building, University of Manchester, Manchester, UK
2
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: 020
679 9452. Fax: 020 769 9426. E-mail: m.orrell@ucl.ac.uk
Contract/grant sponsor: Wellcome Trust.
Copyright # 2005 John Wiley & Sons, Ltd.
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
Accepted 27 June 2005
44
g. a. hancock
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:
Copyright # 2005 John Wiley & Sons, Ltd.
ET AL.
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 www.thecane.co.uk.
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
Int J Geriatr Psychiatry 2006; 21: 43–49.
needs of older people with dementia in residential care
100 (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.
45
tunity 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
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 opporCopyright # 2005 John Wiley & Sons, Ltd.
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
60–104). 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
Int J Geriatr Psychiatry 2006; 21: 43–49.
46
g. a. hancock
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.
ET AL.
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
Table 1. Frequency (%) of CANE met and unmet needs for entire
sample
(n ¼ 238)
Accommodation
Household activities
Food
Self-care
Caring for another
Daytime activities
Memory
Eyesight/hearing
Mobility
Continence
Physical health
Drugs
Psychotic symptoms
Psychological distress
Information
Deliberate self-harm
Accidental self-harm
Abuse/neglect
Behaviour
Alcohol
Company
Intimate relationships
Money
Benefits
Mean (SD)
Met need (%)
Unmet need (%)
223 (93.7)
236 (99.2)
207 (87)
222 (93.3)
8 (3.4)
52 (21.8)
141 (59.2)
122 (51.3)
148 (62.2)
140 (58.8)
185 (77.7)
160 (67.2)
24 (10.1)
87 (36.6)
98 (41.2)
16 (6.7)
110 (46.2)
59 (24.8)
70 (29.4)
18 (7.6)
105 (44.1)
109 (45.8)
216 (90.8)
116 (48.7)
12.1 (2.6)
15 (6.3)
2 (0.8)
31 (13)
10 (4.2)
5 (2.1)
181 (76.1)
93 (39.1)
93 (39.1)
60 (25.2)
57 (23.9)
39 (16.4)
62 (26.1)
26 (10.9)
114 (47.9)
30 (12.6)
3 (1.3)
29 (12.2)
7 (2.9)
64 (26.9)
1 (0.4)
97 (40.8)
28 (11.8)
7 (2.9)
3 (1.3)
4.4 (2.6)
Copyright # 2005 John Wiley & Sons, Ltd.
The average score on the Barthel was 63.81 (SD
18.47, range 30–100) and the average score on the
CAPE-BRS was 16.70 (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 26.76 (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.
Int J Geriatr Psychiatry 2006; 21: 43–49.
needs of older people with dementia in residential care
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,
20–11 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
R2 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 R2 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
Copyright # 2005 John Wiley & Sons, Ltd.
47
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
Int J Geriatr Psychiatry 2006; 21: 43–49.
48
g. a. hancock
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,
Copyright # 2005 John Wiley & Sons, Ltd.
ET AL.
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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