This part of the report summarises and draws conclusions from the results of the questionnaire survey described in Part 5. It compares and contrasts the results from the three groups of respondents and, where appropriate, references and comparisons are made with the information gathered in the earlier phases of the research project (the literature survey in Part 2, the study of enquiries to formal information providers in Part 3, and the focus group investigation in Part 4).

1.1 Interpreting the questionnaire survey results

The questionnaire survey was used to collect data on the needs and problems of disabled elderly people, less frail elderly people, and carers of disabled elderly people, with respect to support and information. As was explained in Part 5, Section 4.6, the data collected was limited by the sampling techniques used to obtain responses from these three populations. This meant that the respondents were almost certainly not fully representative of elderly people as a whole, and possibly not of the three populations of interest, in the UK.

Thus, care must be exercised in interpreting the results of the survey. It should be noted, however, that while the results cannot be guaranteed accurately to represent the needs and problems of the UK's elderly population taken as a whole, they should be indicative of the needs and problems of the three populations of interest. The utility of the survey results is supported by the large number of respondents, particularly in the Day Care Centre and Social Club groups, and consistency of responses between the three groups, despite their apparently disparate nature.

The issue of levels of acceptability needs to be addressed. What is an acceptable percentage of people to experience problems with routine tasks and with accessing information and support? Conventionally, the aim for Ergonomics practitioners is to design to accommodate at least 90 per cent, (preferably 95 or 99%) of the population of interest. Thus, in this study which considers difficulties experienced, the acceptable criterion level used is 10 per cent. This issue is discussed further in Part 7, Section 2.3.

2 Age and gender of respondents

On common sense grounds one would not expect the age and gender distribution of the Day Care Centre Clients and Social Club members to correspond to that of the elderly population as a whole. The respondents were special groups of people. Elderly Day Care Centre clients were disabled, depressed or socially isolated, whereas members of Social Clubs for elderly people were likely to be more physically active and mobile, and have greater social contact than the Day Care Centre clients. The carers of elderly people were those attending carers' support groups. However, the profile of the carers' group (the fact that they tended to be elderly themselves, females, and related to and living with the people they cared for) corresponds with the profile of carers in the UK presented in the literature survey.

3 Day-to-day tasks – frequency of difficulties

The types of day-to-day tasks found difficult by the three groups of respondents are consistent, but the relative frequencies differed. Difficult tasks and the percentages of respondents involved are examined below in 3.1, for Day Care Centre and Social Club elderly respondents, and in 3.2 for the carers of elderly people.

3.1 Day Care Centre and Social Club respondents

The assumption that people who attend social clubs for elderly people are less frail physically than those who attend Day Care Centres is supported by the finding that that a smaller percentage of Social Club respondents experienced difficulties with day-to-day tasks. For purposes of comparison, 15 of the 33 tasks examined were found to be difficult for over 40 per cent of the Day Care Centre respondents, whereas only one task was difficult for over 40 per cent of the Social Club respondents. In addition, a far smaller percentage of Social Club members (3%) needed help from someone else to complete the questionnaire due to having a disability (36% for Day Care Centre respondents).

The 40 per cent level of respondents was used above merely for comparison purposes, and is not being proposed as an acceptable proportion of elderly people to find one or more routine tasks difficult to do alone. Using the 10 per cent criterion level of acceptability (see Chapter 1 in this part of the report), only 5 of the 33 tasks examined have an acceptable percentage of Day Care Centre respondents experiencing difficulties. For the Social Club members around half of the tasks meet this level of acceptability.

It is interesting to note that these two groups found similar tasks difficult (and similar tasks easy), especially considering the fact that lunch clubs are voluntary and provide the lowest level of support for elderly people. In fact, comparing Figure 8 for the Day Care Centre group (see page 108) with Figure 16 for the Social Club group (see page 119), it can be seen that, of the 15 most frequent difficult tasks for both groups, 14 are the same.

The types of tasks most widely reported as difficult by the Day Care Centre and Social Club respondents were fairly consistent with national statistics, but the relative frequencies differ. The General Household Survey of 1996-97 (Office for National Statistics, 1998) examined seven activities for which adults aged 65 and over may need help to carry out. Climbing stairs (10%) and taking a bath/shower (9%) were the tasks for which most people required help. Taking a bath, taking a shower, walking up stairs, and walking down stairs were among the tasks most widely reported as difficult to perform alone by the two groups. However, the percentages of respondents finding these tasks difficult (48-58% of Day Care Centre clients, and 22-37% of Social Club members) were far greater than those found in the General Household Survey.

The day-to-day tasks that were among the most widely reported as causing problems for the Day Care Centre clients and Social Club members were those that required most physical strength and sustained effort, particularly those related to indoor and outdoor mobility. These were also the types of everyday task that caused the most problems for the elderly and disabled elderly focus group participants (see Part 4, Section 7.1).

Gardening, the most widely reported difficult task for these two groups of survey respondents, is physically demanding. The ability to garden easily may not seem to be a very important factor in maintaining a good quality of life. However, Clark et al. (1998) found that keeping a well-maintained house, of which the garden is part, was central to older people's comfort, sense of well-being and social participation. In more general terms, Bowling et al. (1997) found that, for elderly people living at home, anxiety and depression were consistently associated with poor or declining levels of ability to perform everyday tasks.

In summary, although Social Club members were less frail than Day Care Centre clients, they had very similar problems in terms of the types of day-to-day tasks that they found difficult to carry out alone, although fewer were affected. The difficulties experienced have important implications for quality of life and feelings of well-being.

3.2 Carers

In helping the people they cared for to carry out day-to-day tasks, the carers of disabled elderly people had similar day-to-day difficulties as the other two respondent groups (see Figure 25, page 129). Comparison of the carers 15 most widely reported difficult tasks with those for the Day Care Centres and Social Club respondents shows that 13 and 12 are the same, respectively.

For most of the tasks given in the questionnaire, the majority of carers found them easy to do. However, the percentage of carers experiencing difficulties met the 10 per cent acceptable criterion level for only 2 of the 28 tasks examined.

The day-to-day tasks that were among the most widely reported as causing difficulties for the carers were those involving moving and transporting the person cared for. Moving the person cared for also caused particular problems for the carers in the focus group investigation. The task most widely reported as difficult by carers was helping the person cared for to use public transport.

4 Day-to day tasks – severity of difficulties

Those tasks that caused the biggest problems were:

· Day Care Centre clients: getting around outdoors (19% of responses).

· Social Club members: taking a bath (18% of responses).

· Carers: helping the person cared for to use public transport (14% of responses) / take a bath (13% of responses).

Thus, for the Day Care Centre and Social Club groups, the task that caused the most severe difficulties differed from the task that was most widely reported as difficult (gardening). While presenting a well maintained house to the outside world may be important, getting around outdoors and taking a bath are vital to maintaining independence. Getting around outdoors is physically demanding and concerned with mobility, which were areas where the elderly and disabled elderly focus group participants experienced their biggest problems. Getting in and out of a bath is also physically demanding, and was cited as a specific problem in the focus groups.

The survey results also indicated that, while difficulties with visual tasks are not as common as difficulties with physically demanding tasks among Day Care Centre clients and Social Club members, they are among the most severe.

For carers the physically demanding tasks of helping the person cared for to use public transport and take a bath caused the most severe, as well as the most widely reported, problems. Physically demanding tasks such as these caused the biggest problems for half of the participants in the carers' focus group.

5 Access to help

5.1 Day Care Centre and Social Club respondents

Fewer Social Club members than Day Care Centre clients may have experienced difficulties with everyday tasks, but similar percentages of respondents in both groups had problems with getting the help they needed. That is, similar percentages:

· did not get enough help with those things that they were unable to do (Day Care Centres 24%, Social Clubs 27%);

· did not easily get all the help they wanted with day-to-day tasks from the sources mentioned in the questionnaires (Day Care Centres 30%, Social Clubs 39%);

· had needed help and did not know whom to contact to get it (Day Care Centres 30%, Social Clubs 39%);

It can be seen that the percentages of respondents in Day Care Centres and Social Clubs having problems are well above the acceptable criterion level of 10 per cent of people. The percentages show that being identified as disabled by Social Services and receiving Day Care outside their own homes does not give elderly people appreciably better or easier access to help than those who are members of a voluntary social club.

These results are also consistent with those of the focus groups with elderly and disabled elderly participants in that they wanted to know whom to contact for information, advice and help. This was the most frequently stated 'most important point' for these focus groups.

5.2 Carers

Over half of the carers wanted more help with the things they found difficult to do (55%) and had needed help but did not know whom to contact (53%). These percentages are well above the acceptable criterion level of 10 per cent of people to experience problems. Thus, carers were the most needy group in terms of practical help and information on sources of help. Carers in the focus group investigation also expressed a need to know the correct contacts for help.

A third (33%) of carers were dissatisfied with the help they had received from the sources examined in the questionnaire. This level is similar to the other two groups and, once again, is unacceptable. Only 8 per cent of carers said that they did not need such help. While participants in the carers' focus group felt well supported initially with respect to services and practical help, later on they felt they had been left to cope alone. The carers' group in the questionnaire survey would have contained a mix of those who had been caring for some time and those who were still in the early stages of caring.

6 Formal sources of help used

Day Care Centre clients received most help with day-to-day tasks from Social Services and their family doctor (almost 60% of respondents for each source). Carers received most help from Social Services (70% of respondents), followed by their family doctor (55%). Social Club members received most help from their family doctor (37%) and a hospital department (36%). For each of the sources examined fewer Social Club respondents received help than respondents in the other two groups. One would expect the disabled elderly people in Day Care Centres and the carers of disabled elderly people to have had more contact with sources of practical help, especially in the Health and Social Services. However, 30 to 40 per cent of all respondents did not easily get the help they wanted which is well above 10 per cent, the acceptable criterion level for people experiencing dissatisfaction.

The elderly and disabled elderly focus group participants held strong and polarised feelings concerning the helpfulness of Social Services. As stated above carers felt that they had been left to cope by themselves after initial good support from Social Services on first becoming carers. These findings are not in conflict with the survey findings.

7 Access to information and advice

In the questionnaire survey, the best known formal information and advice providers to the Day Care Centre, Social Club and carers groups were: Age Concern (95%, 97% and 99%, respectively); Help the Aged (66%, 80% and 91%, respectively); RNIB (59%, 73% and 89% respectively); Carers' National Association (87%, carers' questionnaire only); and RNID (46%, 59%, 79% respectively). Awareness of the rest of the 17 (18 for carers) organisations examined was extremely poor as they were unknown to over 70 per cent of Day Care Centre and Social Club respondents and over 50 per cent of carers. The most useful organisation to Social Club respondents was Age Concern (46% gave this organisation) and the most useful to Carers was the Carers National Association (50% gave this organisation). Day Care Centre respondents were not asked this question (see Section 5.1b in Part 5 of the report).

7.1 Day Care Centre and Social Club respondents

The literature survey suggested that Health and Social Services staff in regular contact with elderly people and social clubs for elderly people are not fulfilling their potential as important providers of information. Elderly people in general lacked awareness of the various types of support available to them and the vast amount of information on this support. The results of the questionnaire survey and focus group investigation are consistent with the literature.

Respondents in both the Day Care Centre and Social Club groups were largely unaware of the organisations providing information and advice to elderly and disabled people named in the questionnaires. As stated above, over 70 per cent of respondents in both groups were unaware of all but four of the organisations. The elderly and disabled elderly focus group participants also demonstrated a lack of awareness of the organisations providing information and advice.

These findings suggest that receiving day care and having greater contact with the Social and Health services (see Chapter 6, in this part of the report) does not make an elderly person better informed than a person belonging to a social club for elderly people. In fact, on the whole, the Social Club respondents demonstrated slightly better awareness of the information and advice providers than the Day Care Centre respondents.

That the Social Club members had the smallest proportion of respondents that had received useful information from any of the organisations (18%, compared to 44% for Day Care Centre clients and 64% for carers) does not necessarily imply especially poor provision of information about these contacts from the clubs. It may be that most club members had never sought information from the organisations and would, therefore, answer that they had not received any useful information. The "not needed" option was not investigated in the Social Club questionnaire, as it was in the carers' questionnaire.

7.2 Carers

The carers displayed the highest level of awareness of formal information and advice providers, which could be attributed to belonging to a carers' support group. Certainly, the carers in the focus group said they did not have any problems getting information and advice, their carers' support group being the major source. Nevertheless, awareness was still relatively poor for around three-quarters of the organisations examined in the questionnaire (under 50% of carers were aware of these).

Of course, it may not be necessary for carers to be aware of all the organisations if they get most of the information and advice they need from their Carers' Centres (local branches of the Carers National Association). Of the three groups, the carers had the largest proportion (60%) that had received useful information from any of the organisations and the most useful provider had been the Carers National Association. Even so, 60 per cent is not satisfactory, falling below the minimum acceptable level of 90 per cent. In addition, as noted in Section 5.2 in this Part of the report, the percentage of carers who had needed help and not known whom to contact to get it (53%) is wholly unacceptable.

8 Information known

8.1 Day Care Centre and Social Club respondents

The questionnaires examined respondents' knowledge of various topics in which they may have information needs. The level of knowledge of the Day Care Centre and Social Club groups in the different topics was very similar, once again suggesting that greater contact with the Health and Social services does not make an elderly person better informed. Over 60 per cent knew where to get help with: pensions; making a will; housing; healthy eating; claiming money benefits and allowances; looking after the house; looking after yourself; filling in claim forms; shopping; and (Social Club respondents only) exercise. They were most knowledgeable about where to get help with pensions (80% of Day Care Centre and 83% of Social Club respondents knew where to get help). However, even in the area of pensions, the level of knowledge was below the minimum acceptable level of 90 per cent of people.

These survey results are consistent with the literature survey and focus group findings. As already stated, the literature survey showed that elderly people in general have a lack of awareness of the support and information available to them. The elderly and disabled focus group participants also demonstrated a general lack of awareness of the vast amount of information on practical help, services, health, benefits and equipment available to them and how to access it.

Day Care Centre and Social Club members were least aware of where to get help with looking after someone else, followed by financial help to stay living at home (unknown to more than 50%). Day Care Centre clients, as disabled people being cared for, do not need to know this. However, Social Club members, who are generally less frail than those attending Day Care Centres, may find themselves in the position of needing help with looking after another elderly person in the future. Other areas unknown to an unacceptably high level (50 per cent or more) of respondents were: changes in the home to make it easier to live in; and (Social Club respondents only) things to make day-today tasks easier.

8.2 Carers

For each of the areas of information examined, the majority of carers in the survey were knowledgeable about where to get help for the people they cared for. All 12 areas were known to more than 50 per cent of Carers' Centre respondents. They were most knowledgeable about pensions (89% knew where to get help), which is consistent with the other two groups. Overall, the carers were slightly more knowledgeable than the other two groups, possibly due to information provided by their Carers' Centres. Certainly, the carers in the focus group felt well supported in terms of information and advice from their carers' support group.

However, for every area of information examined in the survey questionnaire, an unacceptable percentage (more than 10 per cent) of carers did not know where to get help for the person they care for. The area that they had least information on was financial help to stay living at home (unknown to 43%), which is also consistent with the other two groups surveyed.

9 Information wanted

In the questionnaires respondents were asked if they wanted more information in a number of areas related to support that could help make life easier at home. Their need for the information itself and for information on contacts that can provide the appropriate advice was examined. For all three groups, the area the largest percentage of respondents wanted more information about was practical help they may be entitled to (59% of Day Care Centre clients, 60% of Social Club members and 67% of Carers' Centre members). However, the other areas given in the questionnaire were also wanted by over 40 per cent of all respondents. Therefore, these groups of people could be considered to have substantial information needs in all the information areas examined. In summary, these areas were:

· financial and practical help they are entitled to;

· how to adapt their homes and the products available to make life easier at home;

· whom to contact for advice on all these matters.

A large majority of respondents in all three groups wanted to be told where they could get this information locally (70% of Day Care Centre clients, 68% of Social Club members and 79% of carers).

The study on enquiries to formal information and advice providers (Part 3) identified finance and benefits, community care (support, services and practical help at home), and housing, as major areas of information need for elderly people. The information providers did not supply data on enquiries from disabled elderly people and carers separately to elderly people as a whole. This was fairly consistent with conclusions based on the literature survey (Part 2, Chapter 4), except that the latter also identified the area of health as a major information need for elderly people as a whole.

As for the information needs of the elderly and disabled elderly focus group participants, the emphasis was on contacts, both national and local. They wanted information on whom to contact and where to go for information and help, in terms of: services for elderly people; financial advice; health advice; practical help; house adaptations; and useful products. They also wanted information on their entitlements, particularly in terms of money and services.

Thus, concerning the broad areas of information need for elderly and disabled people (excluding carers), there is good agreement between: the questionnaire survey results for Day Care Centre and Social Club respondents; the findings of the focus groups with elderly and disabled elderly people; the findings of the study on enquires to information providers by elderly people as a whole; and the literature survey conclusions for elderly people as a whole.

However, an exception occurs for carers. There is little literature on the information needs of carers. The carers' focus group, while emphasising the need for information on contacts for help, felt well supported by their carers' support group in terms of information. The survey, however, found that carers had a very similar level of need as the other two groups for the areas of information examined.

10 Sources and channels of information

For all three survey respondent groups, the preferred means of getting information was other people face-to-face (40% of Day Care Centre, 23% of Social Club, and 35% of Carers Centre respondents like this method best). The least liked were the Internet and Ceefax / Teletext (1% or less of respondents in each group chose these methods). However, familiarity with the method of information provision may have had an influence on respondents' answers. If people have not experienced a particular means of information provision, they are unlikely to choose it as one they like best. An example of this is the Internet, for which incidence of use among respondents was measured in the questionnaire. Very few respondents used the Internet (around 5%), which may be the reason it was so disliked as a means of getting information.

This preference for obtaining information by face-to-face contact was also found in the literature survey, for elderly people as a whole, and in the focus group study, particularly for carers.

A large percentage of respondents said that they would use a book or booklet containing the information they wanted (72% of Day Care Centre clients, 87% of Social Club members, and 94% of carers). Even so, the Day Care Centre clients and Social Club members were not prepared to buy it, preferring instead to borrow it from a library. Carers, however, were prepared to buy it. Despite these findings, the following facts suggest that a printed publication may not be the most appropriate means of communicating information and advice to elderly, disabled elderly people and their carers:

· all three groups of questionnaire respondents were prepared to pay only a very minimal price for such a printed publication;

· elderly, disabled elderly people and their carers prefer to get information by direct contact with other people;

· findings of the focus group studies suggested that a printed publication may not be the most appropriate method of information provision;

· the focus group studies and literature survey suggested that printed information is often ignored by elderly people.

For all three groups of respondents in the questionnaire survey, the preferred term for referring to an elderly person was "senior citizen".

11 Help to complete the questionnaire

Fifty four per cent of Day Care Centre respondents and 12 per cent of Social Club respondents were helped to complete the questionnaire. This finding supports the assumption that Social Club members are generally less frail physically than Day Care Centre clients. It is also a good indication that that the people in charge of administering the questionnaires did not simply hand out them out to people that could complete them by themselves, but followed the instructions on administering the questionnaires.

This Part of the report summarised and drew conclusions on the questionnaire survey results, with appropriate comparisons made to findings in the literature survey, study of enquiries to formal information providers and focus group investigation. Part 7, following, pulls together the whole of the research project by: examining the methodological issues which emerged; drawing overall conclusions; making conclusions about the implications for the provision of support and information to the groups of interest; and discussing the implications for future research.