Characteristics of the sample
Of the 24 older people living in the community who comprised the sample, 10 lived alone in their own homes, four lived alone in sheltered housing and 10 cohabited. Of the 10 who cohabited, five lived with children/in-laws, three lived with their spouse, one lived with a sibling and one lived with a paid carer. Table 1 shows the socio-demographic and health characteristics of participants separately for individuals who were living alone (including in sheltered housing) and those cohabiting. As would be expected in such an old population, the majority were women and widowed and levels of disability and physical problems were high. More than a third had moderate or severe cognitive impairment, lower in this community-dwelling sample than would be found in an age matched population-based sample including care home residents. Contact with family members was daily for a third of the sample and at least weekly for 83% (n = 20). Overall, participants were satisfied with frequency of family contact though many expressed that they would like to have more. All reported that they felt they could rely on their family to take care of them.
Table 1
Characteristics of participants (n = 24)
| Living alone | Cohabiting |
n = 14 | n = 10 |
Age Mean (SD) Median (IQR) Range | 97.0 (1.5) 96.6 (1.6) 95.4–100 | 97.6 (1.9) 96.7 (2.8) 95.5–101.4 |
| n | (%) | n | (%) |
Sex Men Women | 3 11 | (21) (79) | 2 8 | (20) (80) |
Marital status Married Widowed | 0 14 | (0) (100) | 3 7 | (30) (70) |
Education Left school aged ≤ 14 Left school aged ≥ 15 | 10 4 | (71) (29) | 6 4 | (60) (40) |
Social class Manual Non-manual | 7 7 | (50) (50) | 5 5 | (50) (50) |
Has relatives nearby | 11 | (67) | 10 | (100) |
Has friends locally* | 10/12 | (83) | 7 | (70) |
Relatives visit ≥ 1 x week | 12 | (86) | 10 | (100) |
Satisfied with family contact† | 7 | (50) | 5/6 | (83) |
Disability‡ No ADL disability IADL disability only IADL and PADL disability | 1 1 12 | (14) (14) (86) | 2 2 6 | (20) (20) (60) |
Cognitive impairment§ Cognition intact Mild impairment Moderate impairment Severe impairment | 7 1 4 2 | (50) (7) (29) (14) | 4 2 2 2 | (40) (20) (20) (20) |
Physical frailty (PHS ≥ 4)|| | 8/11 | (73) | 6 | (60) |
Depression (DSS ≥ 5)¶ | 4/13 | (31) | 1/5 | (20) |
Notes: |
* Data missing on whether any friends locally for n = 2 (both living alone) |
† Data missing on satisfaction with family contact for n = 4 (all cohabiting) |
‡ ADL = Activities of Daily Living |
IADL = Instrumental Activities of Daily Living |
PADL = Personal Activities of Daily Living |
§ Cognition intact = Mini-Mental State Examination (MMSE) scores 26–30 |
Mild impairment = MMSE 22–25 |
Moderate impairment = MMSE 18–21 |
Severe impairment = MMSE 0–17 or, if unable to complete the MMSE, dementia diagnosis from the Cambridge Diagnostic Examination for the Elderly (CamDEX) assessments |
|| No Physical Health Score calculated for n = 3 due to missing data (all living alone) |
¶ No Depressive Symptoms Score calculated for n = 6 due to missing data (1 living alone, 5 cohabiting) |
[Insert Table 1 here]
The nature of care delivery
Table 2 shows the distribution of formal care service use. One third of participants received no formal services. Frequency of contact was not recorded for all services, but of the 10 who received help from care workers the majority received care daily (80%, n = 8). Most participants (17/21 who responded) were satisfied with the amount of support they received from community services.
Table 2
Distribution of formal care services
| Living alone | Cohabiting |
| n = 14 | n = 10 |
| n | (%) | n | (%) |
No formal services | 3 | (21) | 5 | (50) |
Care worker | 7 | (50) | 3 | (30) |
Home help* | 2 | (14) | 0 | |
Community nurse* | 3 | (21) | 3 | (30) |
Private domestic | 5 | (36) | 2 | (20) |
Meal delivery* | 6 | (43) | 0 | |
Day centres | 1 | (7) | 1 | (10) |
Notes: |
* Data missing for n = 1 participant living alone |
[Insert Table 2 here]
Figure 1 shows the number and proportion of participants with informal carers and formal care services supporting them in six key ADLs, in relation to their level of ADL disability (see Methods). The majority of participants required ADL assistance, formally or informally, with many using a combination of the two. Formal carers provided the majority of assistance in the community for all ADLs except housework (Fig. 2). Relative to other ADLs, informal carers mainly supported instrumental ADLs. Informal care substituted for and complemented formal care at low and higher disability levels respectively.
[Insert Figs. 1 and 2 here]
Attitudes towards changing care needs
Older participants’ attitudes towards their changing care needs as they grew older were varied. A large proportion of respondents appeared accepting of their changing needs, acknowledging it as an inevitable part of getting older:
“I’m annoyed that I can’t do the things, but now old age is what it’s all about, isn’t it? You come down a level. You’re not keeping up top or going higher. So you just accept, you know, what comes” (ID1 95-year-old woman living alone)
“After all, you know, it’s like a car that’s running down, isn’t it? There are bound to be bits that aren’t functioning quite as well as they used to” (ID2 96-year-old man living alone)
Although many older participants wished that they could still do more for themselves, there was an acknowledgement of their limitations in their physical and cognitive abilities. For example, one respondent who lived in sheltered housing had been keen to maintain her financial independence but realised she would “just have to let it go by” due to her failing eyesight and dexterity, meaning she could no longer read bank statements or enter PIN codes (ID3 95-year-old woman in sheltered housing).
Regarding plans for the future if their care needs changed, few had made plans but viewed going into a care home as inevitable in the absence of other options:
“I haven’t thought many times, but it would have to be…what would it be? In a home? What do people do when they can’t stay in a flat?...You know more about that sort of thing that I do. What do people do?” (ID4 100-year-old woman living alone)
Though some acknowledged they would rather be in a care home than put additional pressure on their families, in general, the idea of moving into a home was resisted as people were keen to remain in their existing environment. One terminally ill man had asked his GP to promise that he could remain at home. Another respondent who had no family and “nobody in the world” was typical when he said:
“Well, I’m gonna stay here as long as possible. I hope I can stay here for the rest of my days. That’s what I’m hoping for anyway. I know there are facilities if you can’t, but there’s no place like home” (ID5 97-year-old man living alone)
Acceptance of formal care
Older participants were largely accepting of their need for assistance from formal care providers. Though some were initially resistant, they went on to enjoy the limited social contacted afforded by daily visits from care staff. Some proxies noted that participants were less willing to receive increased care input from their family members as they were worried about being a burden on them:
“I stayed over one night just to see exactly what happened in the morning. When she woke up I helped her onto the commode but after that she didn’t want me to help her get dressed or anything. She said “you’ve all done enough now. I’m getting help now so let’s wait for them to come”. So she stayed in bed and, you know, they didn’t come until quarter to eleven” (daughter of ID6, 97-year-old woman living alone)
Experience of formal care services
Difficulty accessing services
Family members were frequently required to arrange care services, often at short notice and with little guidance. Formal care agencies on the lists provided by Social Services were often unavailable and proxies had to rely on word-of-mouth from other community members and colleagues to find alternative sources of private support, often within pressured time-frames causing much anxiety:
“We felt we were very much on our own. It was this one. The self-funding, you go and do it yourself. They... I mean she more or less said that they wouldn’t be able to help us. We got a booklet sent, you know, for in the area. That was it. We had to do it. And obviously the sooner the better ’cos she was taking up a place in [an acute hospital]”.
(daughter of ID7, 96-year-old woman in sheltered housing)
Timing of services, communication and consistency of care workers
Lack of control over time slots and punctuality were the major concerns raised by almost every respondent and proxy who had current or previous interactions with formal care services. Formal carers often arrived very late in the mornings to get respondents washed and dressed, were delayed at lunch time and conversely often came very early in the evenings to put respondents to bed. This had widespread implications for the respondents’ health, well-being and quality of life. From a basic physical needs perspective, respondents reported being incredibly hungry and “busting” to go to the toilet upon the arrival of carers in the morning (ID8, 99-year-old woman living alone). When breakfast was only provided at 11am, respondents were often not hungry for their lunch when it arrived an hour or two later (ID9, 97-year-old woman living alone). One respondent developed a sore, aching spine and joints from having to lie in bed for almost 16 hours each night from 6 pm to 10am; she had also become clinically dehydrated from deliberately restricting her fluid intake to avoid needing to go to the toilet during the 16 hours she was confined to bed nightly (ID6, 97-year-old woman living alone). From an emotional well-being perspective, being put to bed early was described as an isolating and lonely experience:
“…they see me to my bed, pull my covers up and then they go off. So I’m alone... That’s the only time in the day I don’t like at all...” (ID13 100-year-old woman living alone)
People were seldom notified if carers were running late or unavailable, and were often left to ring agencies to follow-up on carer-workers’ availability, with relatives filling in at the last minute. Older participants and proxies were concerned by the lack of continuity of carer staff provided by care agencies; only one participant was unperturbed by this. Older participants would often not know which carer they were expecting and would have to open their doors to unexpected strangers. If respondents preferred certain carers over others, they had no choice as to who arrived at their door:
“No, no. You never know who is coming. That’s another thing which I think, for old people, is very baffling. But on the other hand it’s better than no-one...Well, we do get the same ones but you never know which. And [lowering her voice] some are much better than others.” (ID10, wife of 101-year-old man living with her)
Another area of concern was the amount of time allocated for the formal carers to perform care tasks. Formal carers were reportedly allocated 15–30 minutes per service user, which did not include travel time to the service user’s house:
Yeah. The problem is with these carers is that half an hour with them getting here and going upstairs and getting her ready to wash, half an hour is not long enough, is it really.
(ID11, son of 96-year-old woman living with him)
Participants reported this limited time allocation left formal carers rushing their roles, often forgetting to complete tasks such as making beds, cleaning the kitchen after use or emptying commodes and rubbish bins.
Impact on autonomy
For those who had relatively low levels of disability and were mobile, autonomy was well preserved and augmented by formal care services, which allowed them to remain living safely within the community. On the other hand, for more disabled individuals – while their macro-level choice of ‘where’ to live may have been facilitated by the provision of formal services in the community – autonomy over their micro-level choices of ‘how’ to live, such as bathing, dressing, eating and toileting routines, was frequently compromised due to the unreliable timing of care. In the following exchange a respondent was describing one of the worst things about being her age:
Respondent: “Well, you can’t go to the toilet when you want unless you do it in your pants.”
Interviewer: “Because you have to wait for carers?”
Respondent: “Yes, or you can’t do it when they come. You want to, but you’d break your neck before they get here.”
Interviewer: “And that must be extremely difficult.”
Respondent: “It is”
(ID8 99-year-old woman living alone)
Impact on dignity
There were instances where the formal care services failed to maintain the dignity of the service-users, particularly around personal care and toileting. The unpredictable timing of care in the community often left older people embarrassed. This was a daughter describing the events when her mother’s care worker was delayed:
One time she just couldn’t hold on and it was very upsetting. She never used to have accidents, she was always so clean, and she was apologising and apologising to the girl who came. She felt so ashamed, but of course it shouldn’t have happened
(Daughter of ID6 97-year-old woman living alone)
Relationships with formal carers
Despite the limitations, respondents were grateful for their care workers, acknowledging the difficulties in their role:
“I’m very thankful for people what have helped me. I have… I am really. It’s a difficult thing for people to take on invalids and things like that, you know, ’cos I know they do these things.... And things are done for me, you know. I can’t do them myself, but things are done for me, which I’m very grateful for. And I’m very lucky to, you know, have them.
(ID1 95-year-old woman living alone)
There was sympathy for the plight of care workers, and older participants and proxies displayed concern for carers, describing them as “abused” by the system and its limited resources. Many older participants in the community were very conscious about the scarcity of resources and felt they should not call on Social Services unless there was a desperate need. They did not want to be an unnecessary burden on the system if they could potentially manage alone:
I don’t want to bother them if I don’t need them. They’ve got plenty to do with all the others...without doing people what don’t need them. They’ve got plenty to do.
(ID12, 96-year-old woman living with her husband)