Sot. .SCL Med. Vol. 19. No. 5. pp. 511-514. 1984 0277-9536184 $3.00 + 0.

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Printed in Great Britain Pergamon Press Ltd

A SURVEY OF THOSE WHO CARE FOR THE ELDERLY

AT HOME: THEIR PROBLEMS AND THEIR NEEDS
DEE A. JONES and NORMAN J. VETTER
Research Team for the Care of the Elderly, Welsh National School of Medicine, St David’s Hospital,
Cowbridge Road, Cardiff CFl 9TZ. Wales

Abstract-One thousand and sixty-six over 70s were interviewed in their own homes, 256 of the subjects
had main carers who were non-statutory. These informal carers of the dependent elderly were then
interviewed to examine the nature of the care that they provided, the assistance both formal and informal
that they received and the consequences such caring had on their quality of life. The evidence from this
study supports the view that the family is the main source of assistance to dependent elderly; usually the
woman in the family. Very little assistance, either informal or formal, was received by the carers.
Consequently there was a great deal of distress and psychological morbidity among the carers.

INTRODUCTION into three groups; household tasks, personal care and

It has for many years been the stated policy of the
Department of Health and Social Security to main-
tain the elderly in the community rather than in
residential care [ 11. Indeed the recent WHO Congress
on Ageing held in Vienna reinforced this by saying
that the elderly should be supported to live in the
community and furthermore to live in the community
with their families.
This policy has implications not only for the elderly
and community social and medical services, but also
for those members of the community or their families
who have to support these increasingly disabled and
frail elderly. This issue has to a large extent been
neglected by researchers and services alike. There was
a need for a study to be based on a general popu-
lation of elderly living at home.
This study sought to explore the network of infor-
mal and formal care, the problems and morbidity of
informal carers who assist and support the dependent
elderly in the community and to.examine the impli-
cations of these problems for health and social
services.
METHODS
One thousand and sixty-six subjects over 70 from
two general practices were interviewed in their own
homes using a semi-structured interview schedule
which included measures of their mental and physical
disability and quality of life.
Each elderly subject who reported needing help
with any of 15 tasks basic to daily living or night care
was asked to name one main carer, state their re-
lationship to them and to provide their name and
address.
If an individual main carer who helped a dependent
elderly person was informal, i.e. was not paid a wage
for the services provided, he/she was then interviewed
alone in his or her own home: 256 people fell into this
category. A semi-structured questionnaire was used
to establish the type and frequency of assistance
provided, levels of stress and the ways in which the
caring affected their own quality of life in terms of
their social life. employment, family, health and
mental well-being. Assistance provided was divided
mobility.
Two measures of psychological morbidity were
chosen: anxiety and depression. These were based
upon a list of symptoms and signs normally associ-
ated with anxiety and depression which were taken
from a larger set of question [2,3] and have been
validated by comparing scores with psychiatric opin-
ions.
The distress scale from the Social Behaviour As-
sessment Schedule was used to provide measures of
distress [4]. The distress scale consists of four points
defined for each item as follows: (1) no distress; (2)
resignation; (3) moderate distress; (4) severe distress.
Ratings are based on the subject’s verbal response to
standard questions.
The SBAS was designed to assess the ‘subjective
burden’ (i.e. emotional reaction) expressed by the
carcr in response to the ‘objective problem’ of the
elderly dependent. Ratings are based entirely on the
informants verbal response to standard questions.
Resignation rating refers to those who deny dis-
tress but describe long-term resignation and low level
of expectation. Moderate rating covers a wide level of
distress that is not severe; and severe rating is as-
signed only if the carer unequivocally demonstrates a
level of distress which jeopardizes his own health or
stability.
The measurement of physical disability used for
both carers and their dependents, was based on the
concept of disability and dependency, as difficulty
with, or the inability to perform, certain basic func-
tions which are essential to the maintenance of
independent living. This provided an overall measure
of functional physical disability [2] and included
questions on the ability of the old person to manage
9 basic functions when alone. These ranged from
activities such as carrying heavy shopping or catching
buses to climbing stairs and cooking a meal.
Each activity, e.g. Are you able to wash aN over?
was scored 0 if the reply was without d@?iculty, 1, if
the reply was with difficulty and 2 if the reply was
unable to alone. The overall score has a range of O-18;
Townsend regards people with a score of zero as
having no disability, 1 or 2 slightly affected, 3-6 some
7-10 is appreciable, 1l’-18 severe and very severe.
512 DEEA. JONESand NORMAN
J. VEIXR

RESULTS ping was often undertaken by other friends or rela-

tives or ‘shopping girls’.
Identity of carers Six per cent of carers were rated moderately and
Two-thirds of carers were either spouses (26%) or 2% were rated severely distressed by helping with
daughters (40%); 24% were other relatives and 10% household tasks; daughters (14%) being rated
were unrelated; 79% of them being female (Table 1). significantly more distressed than spouses (2”,)
Two-thirds of the carers were resident: they shared (P < 0.005).
the same household as their elderly dependent. Details of the type of personal care given and who
Half (48%) of the carers were between 45 and 64 undertook it are shown in Table 3. Forty-eight per
years old; 20% were over 75. Non-resident carers cent of elderly received help with bathing and 394;
were younger than resident carers, as spouses tended with washing face and hands but help with dressing,
to be older than other carers. toiletting, medical problems and eating were much
Seventy per cent of carers were married, 15% single less frequent. Again in general the personal care was
and 15% widowed or divorced. Sixty-four per cent of provided by carers only. However, 14% had helped
these carers lived in the same household as the elderly with bathing and all over washing from ‘others only’
subject-most of these were spouses and then daugh- and not from the carer; this was invariably the
ters; 54% of the daughters lived in the same house- community nurse. Also 11% had help with washing
hold. face, hands and hair. Resident carers were consis-
tently and significantly more likely to give help with
Assistance given and resulting levels of stress personal care than were non-resident carers.
Twenty-seven per cent of the elderly dependents Six per cent of carers were rated as moderately and
were reported as needing assistance at short notice 2% as severely distressed by helping with personal
throughout the day or night, 35% at least once a day, care; distress ratings were higher among residents.
22% less than once a day and 16% less than once a Again daughters (9%) reported more distress with
week. Nearly all the dependents required help with this type of activity than did spouses (5%).
some household tasks. This was mostly undertaken Twenty-five per cent of the elderly dependents were
by the main carer only rather than being shared by reported by their carers as being incontinent of urine;
a group of helpers: shopping being the task most 42% of which were incontinent at least once a day.
commonly assisted with by others (Table 2). Shop- Nine per cent of the elderly were said to be faecally
incontinent.
Table 1. Relationshio of carer to elderly dependent by Sixteen per cent of the carers experienced moderate
residency and 14% severe distress at having to cope with this
Residency problem; residents being significantly more distressed
Resident Non-resident than non-residents (P c 0.025).
Relationship No. % No. %
Statutory services and other help
Spouse 66 41 0 -
Daughter 56 34 41 51 Table 4 shows the number of elderly people who
Daughter-in-law 5 3 8 9 received help from various statutory services. The
Son 11 7 8 9
Son-in-law 1 <I 1 1
most frequent were community nurses, followed by
Sibling 9 6 2 2 home helps and day hospital. Home helps (P c 0.01)
Other relative 10 6 7 8 and meals on wheels (P c 0.025) were significantly
Friend 3 2 9 IO more frequent among those with non-resident carers.
Neighbour 0 - 1 8
Other 2 I 4 4
Those with resident carers were more likely to be seen
by a community nurse (P c 0.025). When asked if
Total 163 100 93 102
they received assistance from other relatives or

Table 2. Help received by the elderly dependent with household tasks

House Preparing
Shopping cleaning meals Washing
Who helped No. % No. % No. % No. %
None 22 9 39 IS 77 30 40 16
Carer only 137 54 138 54 138 54 159 62
Carer and others 11 28 30 12 36 14 28 II
Others onlv 26 10 1 t1 5 2 29 II
Total 256 101 256 101 256 IW 256 100

Table 3. Help received by the elderly persons for personal care

Washing Bathing,
face, hands Dressing all over Eating and
hair undressing Toiletting washing Medication Medical drinking
Who helped No. % No. % No. % No. % No. % No. % No. %
None 155 61 194 76 227 89 132 52 209 82 234 91 235 92
Cam only 63 25 54 21 25 10 76 30 41 16 16 6 20 8
Carerandothers II 4 6 2 4 2 13 5 2 <I 2 41 1 <I
Others 27 I1 2 cl 0 - 35 14 4 2 4 2 0 -
Total 256 101 256 100 256 101 256 101 256 100 256 100 256 100
 A survey of those who care for the elderly at home 513

Table 4. Services received by residency Table 6. Anxiety of care* by residency

Residency Residency
Resident Non-resident Both Resident Non-resident Both
N=163 N = 93 N = 256 Anxiety No. % No. % No. 7;
---___-.
Services No. % No. :‘, No. y;
Normal 106 65 57 61 163 64
Home help 20 I2 24 26 44 17 Borderline 39 24 21 23 60 23
Meals on wheels 7 4 12 13 19 7 Neurotic 18 II 15 16 33 13
Norse 40 25 10 II 50 20
Total 163 100 93 100 256 100
Social worker 8 5 5 5 13 5
Day hospit.al 17 10 11 I2 28 II
Occupational
therapist 1 <I 0 - I <I pendent caused them any stress. Twelve per cent said
Physiotherapist 2 1 o- 2 <I that they felt ‘a lot’ of stress and 6% said that they
Voluntary
worker 4 2 o- 4 2 found it ‘unbearable’. Residential status made very
little difference. Daughters reported significantly
more stress than spouses, 17% finding the caring
friends, 47% reported having no assistance at all; causing a lot of stress and 14% finding it unbearable.
significantly more of those who were non-residents
received help (P < 0.0005).
Significantly more spouses than daughters reported DISCUSSION
having no other help (P < 0.05). Of those who did
help, daughters were the most frequently named. Most of the carers in this study were daughters or
spouses, the majority of them being female as has
EIfect on carers ’ quality of life been previously found [5,6,9]. Brody refers to these
Not surprisingly 70% of the carers were not work- daughters as ‘women in the middle’ because they are
ing as many were retired spouses; 29 carers had women in middle age and in the middle in that the
however to give up their jobs in order to care for the demands of various roles compete for their time: roles
elderly person. of carers to the dependent elderly, wives and moth-
Table 5 shows that 11% felt that looking after their ers. As in Koopman-Boyden’s study nearly all the
dependents had definitely reduced how often they carers helped with household task [6]. Apart from
saw their friends-5% thought that it was possible; shopping they in general had little help from family,
significantly more of these were residents (P c 0.01). friends or services to do this. Fewer carers gave
Thirty-four and 15% of those reported moderate or personal assistance because it indicates a more severe
severe distress at seeing less of their friends. Eighteen degree of dependency, but again where they did they
per cent of daughters reported definitely and 7% mostly had to do it on their own. Bathing and
possibly seeing less of their friends because of caring washing were the exception; community nurses
for their dependents; 42 and 23% of these feeling helping with or taking over the bathing or washing
moderately or severely distressed as a consequence. and hairdressers washing their hair.
Rather fewer thought that contact with relatives Incontinence was a common problem among the
had been affected: 8% definitely and 3% possibly. dependents and it tended to cause a great deal of
Fifty and 11% of these were suffering moderate and distress to some of the carers, particularly those who
severe distress. were resident. Community nurses visited 20% of the
Fourteen and 6% of daughters reported definitely elderly and were appreciated for assisting with bath-
or possibly seeing less of relatives, with 48 and 14% ing. Many of the carers who did not have the
of these feeling moderately or severely distressed by assistance of community nurses would have liked one
it. to come and help with washing, bathing or coping
Table 6 shows the anxiety levels of the carers. with incontinence. Home helps mostly visited the
Twenty-three and 13% scored as borderline and elderly with non-resident carers, as did meals on
pathological on the anxiety scale. Daughters were wheels. Many of the non-residential carers did say
considerably more morbid than were spouses that a home help would be useful.
(P < 0.001). Fewer carers were classified as border- As in previous studies the role of caring had in
line (970 and pathological (6%) on the depression many cases greatly affected the quality of life and
scale. Spouses and daughters showed similar mor- mental well-being of the carers [5]. Some reported
bidity. seeing less of their relatives and more commonly less
Finally each carer was asked at the end of the of their friends. This curtailment of their social life
interview if they felt that looking after their de- distressed them more than the actual tasks they had
to perform. Sanford reported that 42% of his sample
of carers felt that their social life had been restricted.
Table 5. Whether caring for the elderly dependents affects frequency
of contact with friends [71.
Residency The levels of anxiety found among the carers were
Does caring considerably raised compared with the 5% being
affect contact Resident Non-resident Both reported as borderline and neurotic among a popu-
with friends No. :, No. % No. 7; lation of elderly people at home. Frequency of sub-
No 127 78 87 94 214 84 jects rated as depressed, or anxious, were also higher
Yes 25 15 4 4 29 II than for a normal population [8].
Possibly 11 7 2 2 13 5
Many of the carers (18%) considered that they were
Total 163 100 93 100 256 I00
under a considerable or an unbearable amount of
514 DEE A. JONESand NORMANJ. VETTER
stress. Again, as with all measures of stress and
distress, the daughters seemed to suffer more than the
spouses.
These results indicate that there is a great deal of
unidentified burden and stress in the community, the
daughters in particular reporting a lot of distress and
anxiety. Daughters seem to be. more affected by the
restriction on their social life and general quality of
life than spouses. Spouses perhaps with age have
gradually reduced their outside and social activities
and expected that they and/or their spouse would be
disabled, perhaps needing care. Daughters having
come to middle-age had not expected to have their
social life curtailed or to return to the caring role and
support elderly relatives. The care involved in bath-
ing, washing and incontinence many found particu-
larly difficult.
This study supports the finding that caring does
not seem in general to involve a large network of
informal or formal carers; particularly if the carer is
resident [5]. When a carer lives with the dependent,
whatever their relationship, they have to bear the
burden of care very much on their own, with little
support from services or other relatives. Many
daughters described how when they had moved in
with mother or father that other people, particularly
family, withdrew their help and even their support,
leaving them feeling lonely and isolated.
If families are to continue to care for increasingly
frail elderly relatives then the community services
must share the burden with them to reduce the strain
and morbidity. Home helps could ease the load of
household tasks, the assistance of community nurses
or even nursing aides with bathing and incontinence
would reduce the distress of carers-especially
daughters.
‘Granny sitters’ would permit carers to develop or
maintain social contact and friendships and short
stay facilities for the dependents would reduce the
stress and tie by enabling them to take short breaks.
Short stay homes would need to be separate from
local authority residential accommodation and hospi-
tals as the elderly have a great fear of being left in
them.
Acknowledgemenrs--Sincere thanks are due to the follow-
ing: The Department of Health and Social Security: Dr
A. J. Wainwright and Partners. Medical Centre. Talearth.
Powys; Dr H. %. Williams and Partners, St David’s clinic.
Clytha Square, Newport, Gwent; Dr D. Wilson and Part-
ners, Medical Centre, Oxford Road, Hay-on-Wye, Powys:
Fieldworkers: Mrs D. Ford; Mrs J. Hurford: Miss G.
Megins, Mrs K. Scott; and my Secretary: Mrs S. Mowbray.
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