ExtraCare - Is well-being worth it? Perspectives from the Aston and Extracare study Carol Holland, Barbara Hagger, Stuart Wallis, Jill Collins, Alexis Boukouvalas, Rachel Shaw, Karen West, Richard Cooke, Leanne Liddell AND The participants!

Copyright C.Holland, Aston University Retirement villages are an important arena in which to promote healthy ageing. Aims of promoting independence by sustaining both physical and cognitive health. Encouraging active ageing Care and support services that respond to changing needs of residents over time (Croucher, 2006). Retirement villages and extra care Integrating some health care in the form of wellbeing monitoring and nurse led day- to-day support coping with chronic illnesses, with domiciliary care, plus extra support for people with cognitive impairments.

Influences of the “intervention” as a whole: how it may work

Previous evidence on retirement villages Engaging in more activities on a weekly basis in a continuing care environment was associated with health-related quality of life (SF-30 subscales) (Jenkins, et al., 2002). Brooker, et al., (2013) benefits in a retirement community on residents living with dementia and mental health problems receiving an enriched opportunities intervention. Participants reported improvements in quality of life and reduction in depressive symptoms. Copyright C.Holland, Aston University

But no one yet has systematically looked at a full range of measures in such villages and schemes in the general population of residents, particularly examining health, wellbeing and cognitive functions and their influences on social functioning and independence longitudinally. Amongst new residents over the settling in period. Relating this to care needs and costs is also needed Copyright C.Holland, Aston University

What we are doing We are looking at the ways in which ExtraCare’s active ageing approach to identifying needs and delivering services for ExtraCare residents has an impact on health, cognition, wellbeing and care costs (i) Activity based support and personal development (ii) Health assessment and promotion (iii) Enrichment/stimulation for residents with cognitive impairments (e.g. dementias) (iv) Active engagement, e.g. volunteering (v) Community activities/membership of groups

Previous evidence on active engagement interventions: Physical activity Physical activity has the strongest evidence for relationships with improving cognitive function (memory, problem solving, concentration) of any active engagement category If it’s good for yourthen its good for your

Previous evidence on active engagement interventions Intellectual activity Keeping active intellectually is associated with higher cognitive ability in older adults, along with maintenance and practice of cognitively demanding tasks (Kramer, et al., 2004).

Social engagement reduces risk of dementia or reduces cognitive decline/improves cognitive performance and wellbeing

What we are doing We are comparing longer term changes in health, wellbeing and care needs with the experiences of ARCHA volunteers (control group matched as far as possible for age, gender etc.) In a longitudinal study following 160 people from when they first move in, and 30 control people who do not move.

Personal experiences of ExtraCare –Focus groups (recorded discussion group on a specific theme) –Case Histories –Informal interviews How do we do that? Qualitative Data

How do we do that? Measurement data Measurements from the normal wellbeing check plus some extra assessments Volunteers record their activities and involvement in a diary (and level of enjoyment)

Copyright C.Holland, Aston University Some findings from the qualitative data ? Why did people move there? “Coping” meant reduced quality of life at home – aware that “this is not good” “I’ve been struggling in the house a long time. And I mean I was paying lots of people for help umm which, that was fine, but the biggest thing nobody could really help me with was getting up and down the stairs. And I was so fed up of struggling and some days, well it was so bad, that I just would stay down......could sleep in the chair if I wanted and I thought this is not good,.... that’s what prompted it really the stairs” (Interviewee 1 female)

Copyright C.Holland, Aston University Why did people move there? Isolation in difficult circumstances “Well my husband had a stroke err about a year ago now and errm it was very difficult for me to cope twenty four seven for him. Umm I did have some help from the stroke community for six weeks but then they, they went and then I was on my own. And where I was living I was the only person in my road that spoke any English, nobody spoke to me. I was in for twenty four seven without anybody to speak to. I couldn’t get out. I was like a caged bird.” (Interviewee 3)

? Why did people move there? Safety and security “I’d realised that I was becoming a danger to myself in the kitchen because I couldn’t see …. The final straw was when I realised, I had a gas cooker, when I realised I couldn’t see whether the, the, the hobs were alight or not; see my point?” (Int 2 male)

Copyright C.Holland, Aston University But I, it’s err far safer environment because where we lived was not nice and going down hill rapidly….you can cope when you’re younger but as you get older its more difficult. It’s far more difficult to maintain an old property, trying to keep it warm. In here we’ve got carers on hand. [My husband has] got far more accessibility going in and out…..It’s fine because we get help. I’m not worrying about trying to maintain an old house. It’s far, far better. (female from a Village) Environment

Copyright C.Holland, Aston University I mean now living in here is completely different….People said we were being silly but you know it’s a completely different world. The, the place where we live [before]….we were on the third floor. The lift didn’t work for two years. And they found asbestos in the walls….I’ve met [more] people here in the last couple of months than the last….ten or twelve years. (Male from a Village) Environment

Crises and pushes Fell in the home and doctor advised that care was needed Couldn’t manage – doctor advised sheltered housing Change in personal circumstances, loss of a partner, increasing health needs. Pulls Friends are dying off one by one, feeling isolated. Can do things here couldn’t do in the community (e.g. because of health issues, mobility, sight)

Some “pushes” from other people ‘I never asked to come in, I was put in. They thought my age warranted me being moved, I didn’t think it was at all. I liked my house but the garden was getting a bit much for digging.’ ….But there comes a time when you can’t do it….I wouldn’t have admitted it.’ (Focus Group 1) “Me son put all the bad points and I’m glad he did now”. “We’ve had a terrible winter….and I don’t think I’d have been able to stay in that…house”. “He did me a good turn and I couldn’t stop thanking him after. After I’d cursed him”. (Focus Group 11)

Copyright C.Holland, Aston University ? Reactions from family and friends ? “Some people thought I was, I didn’t need to, there was enough help from them or my friends. Other people said ‘you’re very, very wise’. Other people said ‘you’ve gotta do what you think’. And I think the people who advised me against coming have changed their minds. Whether they have done it because they realise it’s been a good idea, a good thing or whether they’ve ‘he’s done it the silly old bugger, he’ll have to put up with it now’; I don’t know” (Int 2 male)

Residence Type Participant Count Mean Age Min Age Max Age Schemes 41 (12 male and 29 female) years 6298 Villages 64 (21 male and 43 female) years 6093 ? Ideal age for move into a village “I’m very happy. In a way I’d wish I’d done it a few years ago. You know, two or three years ago.” (Int 3) “It’s a marvellous place to be at our age, it really is. Because, you know, you can be well looked after if you want to” (Focus Group 4) Health and circumstances seemed to dictate when people moved in, rather than age

AGE Group Mean Baseline Age Control71.6 EC75.9 ALL75.1 General Participant Characteristics (from baseline WB data) GENDER Group FemaleMale Grand Total Control24933 EC ALL ETHNICITY Group Asian or Asian British - Chinese Asian or Asian British - Indian Black or Black British - Caribbean Other White backgroun d White British (blank)Grand Total Control13233 EC ALL

Copyright C.Holland, Aston University TENURE Group Leasehold Owner-occupier in communityRent Shared ownership(blank)Total Control33 EC ALL CARE LEVEL Group No careLevel 1Level 2Level 3Level 4Level 5Total Control33 EC ALL General Participant Characteristics (from baseline WB data)

Measurement data What kind of measures? Assessments with our researchers Psychological well being (anxiety and depression) Functional limitations (e.g. moving around, dressing) Mobility assessment if appropriate (sit-to-stand, normal walking speed) Cognitive tests (language, attention, memory) How people see their own health

? Impact of living in a retirement village on health and wellness ? Some general findings so far: There are significant differences between ExtraCare (EC) residents and controls when they first move in, in measures of: Differences are reduced in all measures after 3 months: Specifically, the difference in autobiographical memory is no longer there. perceived health, depression, activities of daily living (both), memory (but not overall cognition), mobility measures.

Depression Copyright C.Holland, Aston University Related to: Perceived health Independence measures Social engagement

Over 12 months (incomplete) Copyright C.Holland, Aston University

Walking speed Copyright C.Holland, Aston University Related to: Perceived health Independence measures Social engagement Depression

Memory Copyright C.Holland, Aston University Related to: Perceived health Independence measures Social engagement Depression

Memory measures continue to improve over 12 months Copyright C.Holland, Aston University

Mental Wellbeing We know quite a lot about the influences of social, intellectual and physical activity on cognition in older adults. Cognitive changes with increasing age are well documented, but there is little research associating change within the normal range with everyday function, “any understanding of cognition as it occurs in everyday life must make a distinction between basic cognitive mechanisms and skills (such as working memory capacity) and the functional use of cognition to achieve goals in specific situations” (Hertzog et al. 2009, p1). That is, what we might call “functional memory” Copyright C.Holland, Aston University

Autobiographical memory as an example of functional memory Functional memory - an aspect of everyday memory that has clear associations with ability to function adaptively in a normal social environment. Specific autobiographical recall has important social functions related to intimacy (maintaining and developing relationships), teaching or informing (illustrating a point, giving advice) eliciting or showing empathy (Alea & Bluck 2003); overgeneral autobiographical retrieval has been associated with impaired social problem solving (e.g. Beaman, et al., 2007), identified as a risk factor for depression (Williams et al. 2007), and implicated as a mediator in the relationship between chronic daily hassles, more serious trauma, and depression (Anderson, et al., 2010).

“holidays or days out” General memory: “ well, we always went to Blackpool”, -- “we always had a nice time”, Specific Memory: “Well, one summer my sister stepped on some broken glass on the beach and the blood was everywhere and we didn’t realise where it was coming from to start with.....” this measure may act as a mediator between basic cognitive performance and more cognitive emotional aspects of functioning in a social environment.

Some specifics Autobiographical memory may act as a mediator between basic cognitive performance and active social engagement and independence measures. Copyright C.Holland, Aston University

Question: Does a measure of autobiographical memory (the AMT) act as a mediator between basic cognitive performance and aspects of independence and functioning in a social environment? With implications for the ability to “make the most of” opportunities for active engagement, or even for actual independence in an older sample. Copyright C.Holland, Aston University

Direct relationships of AMT with underlying measures and outcomes We first investigated the hypothesis that ability to recall specific events is related to psychological wellbeing, active ageing/functional limitations and independence measures, at baseline. Age MMSE ACE-R Anxiety Depression IADLs ADLs Aspects of the functional limitations profile (FLP): social functioning, (e.g. “I talk less with other people) Ability to be specific in recalling autobiographical events is significantly related to:

AM as a mediator between cognition and social functioning and independence ? Copyright C.Holland, Aston University Cognitive functioning Social functioning /Independence measures AMT Social functioning /independence measures Cognitive functioning

AMT over 12 months! Copyright C.Holland, Aston University

So what happens when AMT changes? Copyright C.Holland, Aston University Depression does not change (within the normal range) Perceived health does not change Instrumental activities of daily life does change!! r=0.19, p<0.05. What does this actually mean? Strong relationships of these measures to Care level: perceived health, depression, IADLs, memory, walking and AMT

Relating it all to care level and costs Copyright C.Holland, Aston University

Estimated Yearly Social Care Costs by Level of Care Yearly social care costs were calculated for EC participants based on their level of care. Level of care was converted into the number of hours (median) that they were likely to receive each week, this was then scaled up to give a yearly number of hours. Comparing LA and EC Social Care Cost over 1 Year (by Level of Care) Care LevelLA CostEC CostDifference (LA minus EC) Level Level Level Level Level No care0.00 Grand Total

Changing Care Costs for EC Participants Mean estimated costs were computed at baseline and annual assessments for EC participants. Both EC costs ad LA equivalents are shown in the chart below. ExtraCare rates changed little for the participants receiving care, however there was a cost increase of £ per person per year by annual under LA costing rates.

NHS Admissions – Comparing EC and Control Participants Mean planned admissions per year had fallen by 12 months for both groups. No of admissions (planned) in past year Participant Type BaselineAnnual Control EC Grand Total No of admissions (unplanned) in past year Participant Type BaselineAnnual Control EC Grand Total Mean unplanned admissions per year had also fallen by 12 months for both groups, although only very slightly for controls.

NHS Costs – Comparing EC and Control Participants Total NHS costs were estimated for each participant, including practice and district nurse, GP and outpatient appointments as well as admissions. EC NHS costs reduced by 9.1%. Control NHS costs increased by 16.6%

Health Profiles and GP Usage – Comparing EC and Control Participants Control participants used fewer prescription medicines than the EC participants at baseline (average 4.24 compared to 6.09). No of times seen GP (planned) in past year Group BaselineAnnual Control EC Total No of times seen GP (un- planned) in past year Group BaselineAnnual Control EC Total Both groups had visited their GP (planned) less by 12 months than at baseline. For the EC group the reduction was greatest (at 36.4%). For unplanned (emergency) GP appointments, the control group increased by 12 months (45.5%). EC participants reported fewer (19.4%).

Are these changes significant? A significant reduction in planned GP appointments for ExtraCare, with a small reduction for Controls. A significant increase in unplanned GP appointments for Controls, and a small reduction for ExtraCare residents. Copyright C.Holland, Aston University PlannedUnplanned

Visits to the wellbeing nurses The average number of visits to the WB nurse drop-in clinic increases over time. This could explain the reduction in GP usage observed for the EC group.

Take home points Initial transition from an environment where there are perceived difficulties to one with more support reduces measured differences in wellbeing, frailty indicators and cognition between participants and controls Improvements in functional limitations are observed. Functional measures of memory (Autobiographical recall) mediates basic measures and underlying unhappiness This adds to our ability to predict wellbeing outcomes and predictors of longer term decline such as social and recreational functioning. And also has an impact on perceived health and IADLS, both of which predict need for care and serious health declines.

Take home points Overall domiciliary care costs are reliably less in EC than LA This does not take into account what is spent on generally supporting wellbeing. NHS care costs are greater for EC residents given their greater initial health issues, but fall over 12 months, to a greater extent than controls. Copyright C.Holland, Aston University

Conclusions Is wellbeing and ExtraCare support working? Copyright C.Holland, Aston University

Thank you! Copyright C.Holland, Aston University