Managing our lives: listening, talking and engaging with older people in Lancashire

Title page logos of Age UK Lancashire and Big Lottery Fund Project research team names (placed around the page to avoid either hierarchy or alphabetical order Elaine Bidmead, Roger Clough, Geraldine Moore, Ian Sidney, Nina Trussler

Preface
For a number of years Age UK Lancashire has had a growing awareness that many older people are not able to lead lives that are as fulfilling as they would want and, indeed, have an impoverished lifestyle. There are numerous reasons for this: lack of money, poor health, inadequate transport, depression and uninteresting activities are just a few. Age UK Lancashire in two different projects over five years, both funded by the Big Lottery, set out to work with older people, providers, commissioners and local voluntary and statutory organizations to develop a better match between dreams and reality. The project was focused on three areas: Carnforth, Nelson and Skelmersdale What we have discovered is the different ways that older people manage their lives. It is their stories that provide the clues to the living of fuller lives in old age. So we have gathered accounts of what people say that they would like to do in their old age: what they used to do and miss, the activities they would continue with if circumstances allowed, the new ones they would like to take up, the adjustments they would make to past routines, the problems that they face and the ways that they cope or fail to cope. We have been told of the nostalgia for what used to be and has been lost: nostalgia for people and for activities such as going out for drives and walks, or to events such as dances, theatre, and concerts. Some have talked about the problems of daily life given the ways that bodies no longer perform as they did. Alongside this, people have enthused about a life stage where there is more space to live as they want, freer from external constraints than they had been in the past. There are those who talk of the busyness of their lives whilst others recount the emptiness. The research project aimed to investigate whether the involvement of older people, and others from local communities, resulted in a better match between the sorts of facilities and services available and what older people wanted and needed. The thinking behind this was that if older people were involved in designing the services that they want and need then, not only would the service provision and the sustainability of these services be improved, but also that older peoples wellbeing would be enhanced and their risk of loneliness and social isolation reduced. Loneliness amongst older people is a major concern at the present time. Many policy responses aimed at tackling loneliness tend to towards services that will provide opportunities for people to meet with others. Simultaneously, however, the funding to provide such services is shrinking and local communities and older people themselves are being encouraged to take on more responsibility to provide services for themselves and each other. In some ways the project was hard headed, recognizing that it is not possible to meet everyone's aspirations: choices would have to be made as to which developments to pursue. The contention was that if older people at a local level were involved in those debates, there would be a closer match between hope and reality. However we had not reckoned on the huge cuts to local authority services that started to have an impact over three years ago: these resulted in a dramatic change

to the local climate, with major reorganizations and job losses, and much less opportunity for the planned, co-operative endeavour. A particular challenge for this sort of action research is that it is comparatively easy to collect peoples views about their lives, their communities, about services and activities. It is much harder to use the information to change anything. We were determined to involve older people as fully as possible in the life of the project and to let others know about what has been successful, and what has not worked so well. There is a lot of information about what people want to be able to do in later life and about what gets in the way. We did not want to produce yet more information on the problems: we wanted action.

So what happened, what did we do?

o We conducted two surveys of older people in Lancashire to record older peoples assessment of their lives, in particular their assessment of their health and well-being. In 2010 we had 706 respondents (27% of those approached). The survey was repeated in 2012 to look at whether there had been changes - we approached those from the first survey who had said they were happy to participate again. 190 responded, again a rate of 27%. Some of the original group will have died or moved away and we think it likely that those who replied would be fitter. o 10 older people worked with us as researchers having taken a 7 week training course. o We conducted interviews with 90 older people and 45 service providers to talk in greater depth about peoples lives and the services available. o We held discussion groups with older peoples groups. o Reports about the project were written at regular intervals and published on the web site. o There have been feedback conferences in each of the areas. These were an opportunity to bring a range of people together to discuss solutions to the problems faced by older people in the three areas. Participants included older people, carers, other members of local communities and those who plan and run services. Each event involved over sixty participants. o We have field notes written by researchers and neighbourhood workers. o We have written three guides for voluntary organisations on Evaluation, Working and engaging with older people, and Older people as researchers. o We have started talking about the project results at different conferences. o And some new activities have been developed.

What we were told in brief

First, in spite of worries and failing health, most older people enjoyed their current stage of life, in particular the opportunities to live as they want. Secondly, many struggle with change to themselves, close family and friends, the places where they live and to their sense of community.

Older people said that they wanted:Places to meet and talk: these must develop to match what different groups of older people want. The means to get to places there were frequent references to the way that people were cut off not only from pleasurable activities but also from essentials such as doctors, shops and post offices. And, repeatedly, they talked about wanting purposeful things to do: more variety; a wider range of activities; younger older people did not want to play bingo or go to lunch clubs. Older people also told us about the barriers to participating in activities, most notably access, cost and information. Armed with these messages from older people our aim was to work with local older people and with community activists to develop the types of opportunities for leisure and pleasure that older people wanted.

Survey results
Surveys 1 and 2

Slides with numbers breakdown by sex and age; examples of some questions and summary of responses. Add details of peoples state of health and wellbeing, and of being alone and of difficulties in old age. Details from interviews and quotes to follow
Survey 2

Slides to show changes and what stayed constant - Have the lives of older people
in their local area have improved, got worse or stayed the same? Over two year period 81% thought there had been little change, 3% better, 16% worse cuts, NHS under pressure

Numbers of people, as below

Have any of the following impacted upon your life; bereavement, illness or injury, financial, the services you receive, housing, local area, family? We should get exact question

asked.

Number (N) % of respondents* Illness or injury 72 38.5 Bereavement 44 23.5 Family 39 20.1 Financial 27 14.4 Housing 15 8.0 Services you receive 13 7.0 Local area 12 6.4 Other 7 3.7 None 54 28.9 * This total may not add up to 100 as some respondents may have had a number of challenges over the two years. 4

To highlight in this two year period nearly 4 out of 10 people reported a

serious illness or injury; nearly a quarter had faced bereavement of someone close to them; one fifth reported there had been major family changes, one in seven had financial problems whilst nearly one in twelve referred to housing problems. Services had got worse for one in fourteen. However, nearly one in three said there had been no significant changes in their circumstances.

Overall findings
freedom

The best things in life were said to be

Being able to do things when you want, and where you want without time limits.

what people had learnt about life Experience, confidence, compassion and
wisdom I have gone through difficult times and come out a little wiser and never judge anyone til you know them.

the feeling that the hard work had been done

I would not want to be young growing up into todays world.

Not surprisingly some thought the support they got was very good whilst others found life a struggle.
My area has many clubs and activities for older people so I dont think any more could be done. I think the support that my husband and myself get is very good indeed; it couldnt be better. Others wrote about the changes that had occurred and the difficulties that they faced in coping: The impact of many of these events bereavement, illness, family moves - is that older people may find that they are on their own more often. Typically this being alone will be described as loneliness. Sometimes the person refers to missing the presence of the other Very lonely since losing my dear husband. This loneliness is not only about loss of husband or wife. The loss of life of my two best friends one known for 79 years, the other for about 40 years. Very sad, especially when I lost my husband in 2005 loneliness can be a killer. This may be combined with the fact that there are no compensatory relationships

No special friends that help me when I feel very lonely. I left my home in Hampshire in 2007 to be near my daughter who could help care for my wife. My wife worsened and went into care within three months of coming here. My lifetime friends and relatives are in Hampshire and it is very difficult for a single octogenarian to form meaningful contacts in a new town. No one calls in for a cup of tea and a chat. Someone else mentioned that all of her family lived too far away. Another person realized that one answer was to cultivate new friends but noted that she was unable to form the quality of relationships that she would like stating sadly not many friendships. A man spoke of the single biggest challenge he had faced over the past two years: My wifes death and trying to carry on as she would have wished. It has become clear that social isolation and loneliness is a complex phenomenon with a host of causal factors. Some of these are to do with individuals: people seem to be more or less resilient to the same circumstances. However, many other factors are external to the individual and the result of things that happen to them, the death of a close friend or partner being most significant. It is important to distinguish between those who do not have many external contacts but are satisfied with their lives and those who have strong feelings of loneliness. But, whatever the cause of isolation, interventions must be flexible to the differing personalities and needs of older people.

Some were made uneasy by a changing world or the pace of change Problems

might surround new technology or systems, for example with automated responses on telephones, or be about the way that the place where they lived no longer felt like home. The place where we live During the research it became clear that one of the aspects that made a difference to older peoples perceptions of their lives was whether or not they felt part of a community. In the survey just over half (53%) felt they did. They valued neighbourliness or the feeling of being an insider, being a part of what is happening, feeling that you belong, are recognised, acknowledged and appreciated. They spoke of volunteers organising events, people stopping to speak, confidence that they would get help if wanted, a neighbourhood kept tidy and a local church or mosque. These all appear to be key factors in creating resilience to cope with change. We thought it would be important to look further and asked people to tell us what the word community meant to them. 1.

It encapsulates what, for me, is the most important aspect of community; namely that a community is a shelter (a fold) for the vulnerable; it stands between the weakest members of society and the 'elements' (exploitation, discrimination, racism, sexism, ageism). Without community some will survive, but many more are lost. 2.

The photo taken from the Castle grounds has another smile appeal. The way the castle has been refurbished is invaluable to the community. Seeing the castle standing proud and erect high above the town cannot fail to please the eye. Personal contact with people is not the only way to make people

feel good, but seeing beautiful surroundings can also be helpful. Personal contact is also most important. 3.

What does community mean to me as an older person? Community means home, family, friends, that warm feeling of belonging and doing things together, that all over pleasure when you arrive at the Age Concern event that you have been thinking of since early morning and now youre here, you open the door to see all those friendly faces, all those smiles and welcomes, and a smile from the organiser who nods in a satisfying way, who knows that all the planning and preparation for this moment of togetherness hasnt been in vain. 4.

The photo is of The Coronation Gardens in Waddington. This garden is used by the community as a peaceful beautiful place to be. The gardens are also run by the community, as each plot is tended by people of the community. The pleasure the gardens give to residents and visitors alike is paramount. The gardens have great smile appeal. Other points made about being part of a community being a part of the place and the people wanting others to be aware of you but also wanting privacy feeling that people are friendly and respectful sensing that you fit in; this may change over time; the difference between feeling an an insider or outsider. knowing that others will look out for you. knowing that others will help if needed. sufficient places locally for events/facilities Given that older people are likely to spend more time than other adults in their homes or immediate locality we asked what was liked and disliked about the areas where they lived I am lucky to live on a street where most of my neighbours are neighbours. Support each other if ill doing shopping etc. keep an eye on the elderly neighbours. Watch out when neighbours are away. Likes access to other places - countryside, towns parks; villagey feel pleasant road clean, civilised flowers quiet the attractiveness of the area good local facilities shops and services 9

shops (post office, newsagents, chemist, food) banks doctors, medical centre library pubs places of worship, village hall, community centre cafes theatres events and activities places to meet others Dislikes - the appearance of the place The lack of maintenance in the sheltered accommodations. Gardens never weeded or looked after, grass mowed four times a year and shrubs pruned once a year. - litter bins not emptied - dumping of rubbish outside houses, people throwing litter into gardens at night - dog mess - anxieties about safety - no proper facilities for the elderly; its disgraceful - lack of activities, clubs, classes, meeting places and services. Information Another frequently mentioned topic was the difficulty that many found in knowing what was happening in the local area. Local knowledge and accessing information and advice about services and activities were seen as important, although not always easy to come by. I think there are services that people could have but you never hear about them, you know, unless somebody tells you, unless it is made public; its the same with the benefits and pensions and that, an awful lot of people can claim but they dont tell you (what you can have) til you hear it from somebody else. I think theres a lot of services, like from you, but we dont know about them. How would you get involved with it if you dont know? You see this is it, we never get the information do we? I feel that we are isolated and excluded and also there is lack of awareness and knowledge of services. It is even more difficult when you are unable to communicate effectively and are uneducated. I dont know what activities there are. I think a lot of us just dont go out in the evening, I dont know what activities there are. Dont know whether theres any clubs or anything now Ive no idea, cause I dont use them I dont know. Dont know what there is.

10

It was amazing how few attendees were aware of the range of things going on in the area: general awareness was very poor: Everyone was saying it needs to be better publicized but when you ask how do you publicize it better its really hard to get that answer because you do all the conventional stuff ... and you still only reach a small fraction of people and I think that is where organizations struggle [...] In Skelmersdale in particular, because I think there is a lot going on there, I dont think it is so much that things arent there for people, I think its just that people dont know what is there so they feel its not there and thats just the same as it not being there at all really.) A lot of information is on the internet these days and not everybodys comfortable with it, some older people are and some are really anti it and I find that it really polarizes people, when you have meetings people get really angry about the fact that theyre almost being forced into using a computer. Its how do you find out about those activities and there doesnt seem to be a central place for people to be kept informed about whats happening ... theres no central hub where people can go and get information. I think people find things out by good luck rather than by good management. We feel that there is lack of awareness or not effective promotion for those who are unable to read, write or understand English. Id like to play bowls and Id like to come on your allotment but its finding time; but then again I didnt know that we had an allotment. This is it, its getting the knowledge. But it costs money to advertise. As we investigated this topic further we came to see three different aspects to the problem of information provision. The first is that information may be produced but not relevant to an individual at the time that it is circulated and when wanted, cannot be found or has been forgotten about. This may be partly solved as the local authority system Help Direct, set up as a central information point, is better established and known. But there will remain details of local activities that this system does not cover. The second difficulty is the well-known problem that a data base is only as good as the quality of the information maintained on it. And wellestablished information banks may not be kept up to date. Thirdly, people use very different ways to find out what is happening: some do not access data bases and ignore pamphlets. Many people told us that word of mouth is the surest way of passing on and finding out, and there is no doubt that informal discussions at clubs and centres is an important mechanism in disbursing information.

Living with dementia

The problems faced by people living with dementia and their family members have become a powerful strand of our findings. Our understandings have come from a dialogue throughout the project: Too often the person with dementia is talked about as if they are no longer a real person, as if they are a body, shell with the person gone. As time passes the focus is increasingly on the person defined as carer, with less 11

understanding or attention to the changed life of the person with dementia. The person with dementia seems to get seen from early on as someone to be looked after, someone from whom the family member needs a break. At its extreme this is found in the response of a hospital doctor to a relative seeking the best for her loved one. She was told to put aside his reality as he has no quality of life. As well as being inhumane in failing to understand the experience of the person with dementia, such attitudes ignore the feelings of love, protection and concern that the family member has for the other person. It was clear to us that many older people with dementia and their husbands, wives, sons and daughters, wanted to hold on to their relationships and do things together. Frequently they had stopped going out because one of them would be concerned about the behaviour of the person with dementia, the reaction of other people or the suitability of the environment. The family members find themselves described and defined as carers and of course this is in part accurate they do look after their loved one. But carer is inadequate as a definition of the relationships and feelings of those who live with people with dementia: it confuses, because the person defined as carer is still in a relationship as partner, child or friend. A large part of the distressing confusion for the family member is that the relationship continues alongside the need care. The person with dementia and the family member will be aware, in different ways, of their past, the present, and their concerns about what the future holds.

Slide(s) along the lines of those on the next three pages I can amend these or Adam can produce ones that he prefers Relationships and roles

12

13

Time dimensions past (history, memories), present and future

Despite some offers of support, most people feel on their own and helpless, struggling to find out what is likely to happen and the sort of support that may be available. It is clear that despite the existence of certain services (which are extremely patchy and limited) which commissioners and providers think meet needs, the experience of those living with dementia is largely one of isolation.

Time
past future

present

memories
The impact of dementia

hopes and fears

Several people told us about the problems of living alongside someone in the early stages of dementia, knowing something was wrong, but not getting a diagnosis. This causes terrible stress as well as not encouraging early access to support services. Yet the diagnosis is a shock, probably for the person with dementia, certainly for the family member. One person remembered that when her husband went for tests she had wanted to sit in with him but was not allowed to do so: She said, Were going to ask him questions and I said, Can I come with him? Now I know I would have had the right to go in with him but I didnt then ... And he came out, he was crying, a big strong man, he was a lovely, lovely man, he said, Ive let you down sweetheart; Ive let you down. I said, Why have you let me down? He said, I couldnt answer all their questions. Now for him to be distressed like that I was angry, because what if, I mean I should have been there holding his hand, I wouldnt have answered the questions, I would have held his hand and supported him, but we werent allowed to do that. 14

And the diagnosis came as a shock: I remember when my husband first was diagnosed with Alzheimers I was at my wits end because one of the things that shocked me was the diagnosis given to you was very bald. It was a case of Your husband has Alzheimers. I remember sitting with my daughter, she teaches and shed managed to get some non contact time and come with me, and that was it, it was Your husbands got Alzheimers and we sat and didnt know what to say because it was a terrific shock. We knew there was something going on but we didnt think it was that. We have become aware of: the shock of realisation of what is happening, coupled with fears about an uncertain, but terrifying, future; the accompanying isolation for both the person with dementia and the family member; the responses of each of these to their new reality, with difficulties in talking about what to do, and the new paths for each of two individuals; the known patterns of response, such as withdrawal and denial, guilt and anger; the distinctive journeys of the couples; whilst there may be some patterns in behaviour and response, as outlined above, each situation is different because of both the existing differences in relationships and the different impact of dementia on individuals. So, for example, there are several people who stop going out because of anxiety about behaviour, but there will be others where the behaviour of the person with dementia is not problematic in social settings.

Going out
People struggle to work out how to live their lives following the realisation that their loved one is not as he or she was. What came over forcefully was the isolation and loneliness of the family member, coupled with lack of knowledge of what is happening, and lack of support in thinking about what to do. This theme of working out what to do is important for the person with dementia as well as the family member. It seems rare for even the best of services to help both parties think about what is best to do. The continuing relationship between the family member and the person with dementia is not well supported by current services. There is some attempt to provide both parties with information and to offer relief to the family member, often in the form of day care. Our research shows that family members also want to continue their lives with their loved one. In part this is about finding ways to continue to live within the existing relationship, as partner or child. In part it is about doing things together. There is a dearth of such opportunities, sometimes because of the complexities of organising a visit out, at others because the behaviour of the person with dementia is thought not to fit in with the expectations of the activity, not only for example in going together to a film, concert or talk but also in places such as cafs and pubs.

15

There is anxiety in the general population of older people and their families as to whether current aspects of ones behaviour are indicative of dementia; sometimes open, sometimes locked away beneath the surface. It is well established that memory recall changes with age, with recent memory becoming less certain. Of course this is also a possible early indicator of dementia, so many are concerned about the patterns of their behaviour and do not know how to check out their concerns. Evidence from our research suggests that some people have approached their GP with memory concerns but have been told they have nothing to worry about, a position they are 16

more than happy to accept. However, some time later, in one instance three years later, the same person is diagnosed as having dementia. Despite acknowledgement that early diagnosis is beneficial to people with dementia, the under diagnosis of dementia is well documented.

What people wanted to support their lives

Moving away from a focus specifically on dementia, we found out the hopes and dreams and the problems of the research participants. What, we asked, would make a difference locally? There were two main responses places to meet and better transport.

A place to meet
A local meeting place with activities, speakers, help and advice centre, social activities - accessible to all who need social involvement perhaps with physical/mental disabilities, so they are not excluded. Provide a drop in centre for people to have a coffee and a chat not everyone likes dominoes or cards. Most people just want someone to talk to. Mornings and afternoons are better because people dont like going out at night. A sort of youth club for older people to mix and form interests together, both male and female no kids allowed!! I think the area would benefit from a place where over 60s people could meet for a brew and a chat. A social centre. I also think that it was a good service when we had community wardens who kept an eye on the elderly in the area. I have a busy life but perhaps other people who live alone would benefit from a community centre or place to meet other retired people. I think we could use local venues for tea and chat for people on their own. By having a building where we could meet once a week; I remember my own grandmother used to enjoy her weekly trip to the pensioners club where they would have a cup of tea and may be a chat. Church and private halls seem too expensive to hire for the smaller clubs. I think the village centre should do more for the elderly, by letting them use the rooms just to meet up for a brew and chat and not charge too much money.

17

Transport and accessibility

Older people frequently have difficulty getting out and about and these may be compounded by the inadequacy or high cost of public transport. The reform of public transport lies beyond the scope of our work, but we cannot ignore the frequency with which we have been alerted to the impact that transport problems have on the lives of older people. There are three interconnected factors. The first is the mobility of the individual, the ease with which they can get around. Secondly, there is the immediate environment to someones house: the difficulties caused by steps, uneven paths, lack of pavements and hills. The third factor is the adequacy of public transport: the frequency of buses, whether the timing works well for visits to surgeries, shops or hospital, and the ease with which people can get on or off buses. Recognising the range of factors is important because local lobbying frequently highlights the infrequency of bus services. But there will be those who would not be able to use the buses, however frequently they might run. We are looking at ways that it may be possible to develop car sharing schemes. One thing leads to another Reports like this tend to summarise and group together factors that have something in common, and thus to report on themes such as social isolation. The reality of peoples lives is that many factors will intertwine. Isolation may be triggered by changes in life circumstances, but then compounded because of not having access to transport. Several people noted that what they were able to do had changed once there was no longer a driver in the household: they no longer went out for drives, to dances, concerts or lectures as they considered they could not ask a friend to take them somewhere and then have to collect them afterwards.

Activities

(Montage of fliers, files and photos)

The key themes emerging from the research are: a) the difficulties that older people face in finding out what is going on; b) the wish to have purposeful things to do, something more than filling in time; c) the inadequacy of services for people with dementia; and d) problems with transport. We have used these topics as the drivers to look for opportunities to respond in each of the communities. There is no doubt that the provision of purposeful activities achieves much more than maintaining peoples interests and has been shown to have a greater impact on loneliness than befriending or lunch clubs. Older people highlighted the types of activity they wanted to participate in; these were many and various. A critical factor that emerged was that any activities should develop from what people wanted, rather than the assumptions of providers. At the feedbacks events, we asked whether there were any specific social groups or activities that individuals would be interested in attending. Older people and those who plan services said that what was wanted was more variety and bespoke activities, structured for what people want. Some have told us what they do not 18

want: lunch clubs or bingo are mentioned as pet hates. Yet others stress how much they enjoy lunch clubs and bingo. Achieving a consensus on what is a purposeful or worthwhile thing to do is not simple. We were told about the barriers to participating in activities, most notably access, cost and information. Armed with these messages from older people our aim was to work with local older people and with community activists/stakeholders to develop the types of opportunities for leisure and pleasure that older people wanted. We heard about the value of some activities

Our Walk Leader ushers everyone outside and were off, now that we are outdoors we respond to the greenery, its wonderful, its fun, and were having a laugh, we stop for a photograph or two, admire the trees around us changing colours, breathtaking, we even find ourselves giggling as a squirrel scuttles away. As an older person I already feel happier, less worried, sociable, relaxed and more at peace with those around me. Zippety-doo-da, my oh my, what a wonderful day! So what were the activities that we developed? Carnforth Carnforth Station Visitor Centre. A social gathering with refreshments. Elaine Add a sentence about number of sessions, describing better what goes on, whether continuing Two Relishing Retirement Booklets These have been written by the research team to alert local people to what is going on in the Carnforth area. The aim was to fill the gap that we had been told about, the lack of knowledge about what was going on. Several people said that they booklets were really useful, indeed one person wanted to copy the idea for another area, but we think it

19

would be important to examine how to maintain the impetus of publications like this: who is to produce them? what cost? where circulated? what possibility of support in the local media? Walk at Royal Society for Protection of Birds centre, Silverdale. 19th July 2012. People travelled to the centre by train, and were shown around by staff. Age UK Lancashire staff undertook training as walk leaders. We dont know whether or not there is a demand for regular health walks. Two events that the project team had thought fitted what people had said was wanted were widely publicized, but turned out to be nothing more than damp squibs with nobody turning up. One was to be a weekly afternoon at a pub, with games. The other, put on by Extra Time linked to Morecambe Football Club, was to have been a pilot with games that, hopefully, would have led to more physical exercise programmes. Skelmersdale Spring into Action Event, 29th February 2012 - An information day with local organizations having stalls at the concourse in the centre. Asda Coffee Club / Information Point, from 22 May 2012 The aim was to provide information and advice at a weekly coffee club that had been started at ASDA. The research team is organizing a rota of advisers. This club continues to meet. West Lancashire College Over 50s Launch, 29th May 2012 - An open event for people over 50 offering information about learning opportunities and pamper sessions. Birch Green Community Centre (afternoon tea event 50+)31st July 2012 - The aim of the event was to give people an opportunity to identify the needs and wants in the area, and to promote an under-used centre. Canal Trip / Public Transport day, 27th June 2012. A small grant was obtained to fund a canal trip to give older people the opportunity to plan use of public transport, visit a local lunch club and have an enjoyable afternoon out on the canal. Working with Skelmersdale Senior Citizens Association . Our development worker has worked with this group; she assisted them in organising a Christmas Lunch at West Lancashire College in Skelmersdale, 14th December, 2012; 38 older people booked for the Christmas lunch and Skelmersdale Senior Citizens Association got 30 new members as a consequence.

Nelson was the area where we were least successful in developing new activities,
though the most ambitious event did take place there. To build on our knowledge of the areas and what was wanted, we had appointed a 12 hour, part time development worker to each area. Unfortunately the person appointed in Nelson was unable to start for health reasons, which in part explains the limited developments in Nelson. However we did hold a Elaine to develop - Add details of Nelson event in

February

The Dukes, Lancaster

20

One outcome from the project has been collaboration with The Dukes Theatre to offer older people and their families increased access to the arts. Events will have a focus on ageing to counter entrenched views of old age, promote understanding and encourage discussion. There are several, different aims. One is to look at the barriers that stop people going to the theatre as they get older and then to try to overcome those obstacles. For many people, old age provides a chance to try out new interests and theatre and film performances present an exciting opportunity to look at the world through new eyes. In addition we are working with the Dukes to make greater use of creative arts. So what has happened so far. There have been two performances in the theatre with a third to follow in May. Agnes and Walter was a story told in dance of a couples relationship in their youth and then in old age. The performers who took the parts of the older couple were themselves 68 and 80. Mind Walking looked at a man struggling with dementia and the impact on his family.

Both of these were followed by discussions, led by Age UK Lancashire, between the performers and the audience. In a lighter vein in May Virginia Ironside takes a light hearted look at ageing. Alongside these, we have set up afternoon film shows to offer people with memory problems and their family members an opportunity to socialize for 4 there is a film, coffee and pastry, and singing in the interval with a live pianist. These events are open to the general public but the theatre environment has been adapted to make it easier to find your way around: signs have been made clearer, there are extra lights over exits and two training sessions have been held for staff and volunteers at the Dukes. Alongside the film shows there is an informal opportunity for people to find out about memory problems and dementia we have called this A Journey Caf. Films show so far have been Charlie Chaplins The Kid, Singing in the Rain and Calamity Jane. We want to select films that the audiences ask for. A final strand in the work with the Dukes is the setting up of creative arts workshops for older people. The first one, a creative writing workshop for older people, is called Capturing Our Life's Journey. The leader will work with participants to reflect on their live, thinking about the present, contrasting with the past, and their continued journey to the future. The aim is to create a piece of writing from all the contributions and then to explore more individual opportunities of creative writing. The focus of the second workshop will be on singing, encouraging people of all abilities to develop their voices. We hope to get funding to capture what is successful in these schemes and then replicate in other parts of Lancashire.

21

What have we learnt about stimulating activities?

There needs to be some sort of presence in the community. We had started with Community Development Groups in each area. We invited people to come and discuss our plans and the ways that we might take these forward. These groups petered out and we are trying to understand the reasons for this and the lessons that we can draw from the ways that they were constructed. Neighbourhood Development Workers To build on our knowledge of the areas and what was wanted, and in particular to assist older people to develop services for themselves and their peers, we appointed a 12 hour part time development worker to each area. The two people appointed worked in very different ways and we have reflected on whether Age UK Lancashire will want to appoint such staff in the future. The best laid schemes of mice and men oft go awry Some events that were carefully planned, in line with what we had been told was wanted, and were widely publicized failed to attract anyone at all. The frustration of project staff was mirrored by others at the feedback conferences of times when, similarly, they had set up activities only to find people were not enthusiastic. We held another workshop discussion to try to understand this further. Self help and management Many policy initiatives are based on an assumption that once an activity is established with outside support, there will be plenty of people around to keep it going. But there are numbers of older people who do not want to continue with this sort of endeavour, particularly if they have been so involved in the past. Since Ive retired I havent wanted to do that; I havent wanted to use those skills and knowledge that Ive had professionally all my working life to support those things within my own village, Ive done it all my working life and I didnt want to do it in my retirement. Why should our community support the over 60s? Why not put the question to the highly paid officers at the town hall who should have this responsibility? Our own approach, in line with ideas from government, has been to work with local communities so that individuals and organizations would take responsibility for activities and developments. There is a logic to this, in that services and activities are likely to match what people want if local people are themselves involved in their organization. However, it is clear from our research that there are people who have taken on roles of responsibility in local activities for many years, and now want a rest from such events, or find themselves unable to continue in the same way. We are no longer convinced that there are sufficient individuals in all communities to provide the types of support needed, in particular if account is taken of the differing profiles of areas in terms of income, housing and environment quality, levels of disability and proportion of the population aged over 65. It seems likely that activities that support older people to lead fuller lives increasingly will be seen as 22

ones that are to be managed by local communities, with health and social care support geared to those with higher levels of need. This may lead to the equivalent of a post code lottery with some areas having far better community activities than others. Therefore it may be that to equalise the availability of support there is a need for posts such as the neighbourhood development workers created for this project.

Impact of the project

The value of being involved We have evidence that the research participants value being involved in the project, whether as researchers, interviewees or at the feedback events. For example, people at the feedback event at Skelmersdale, wrote in evaluation forms: Gathering information Very informative and interesting event; It has been a really worthwhile day. I am glad I attended and Ive gained a lot of ideas and encouragement from being here. Thank you to all who planned and took part in it. A way of finding out about things. Being able to give your views So we can voice our views and opinions. Discussing with others Hearing different views gives you ideas. The solutions to problems are often already there in the community they just need teasing out. Support networks need to be improved. The place where we live Lots of positivity about Skelmersdale. A place, an occasion when people listen to others Need to listen really listen to people themselves and carers as they are best placed to say what their needs are. The quality of dementia services The talk about dementia was excellent and extremely moving. It does make you more afraid of growing old and what will happen in the future with all the cut backs. We are developing activities that match what people say they want. We will evaluate these and see whether older people think that they are valuable. A Lancaster resident spoke at the national Pensioners Parliament at Blackpool, drawing heavily on our report: I want to talk now about Carnforth and for this I am indebted to the paper, Giving a Voice to Older People in Carnforth by AgeUK Lancashire. This is a great report on life in a rural community and gives voice to pensioners who are normally ignored.

The project has given us a developing understanding of old age as people shared their thoughts Many echo the strangeness of recognizing that your body has aged but not feeling like the picture the body portrays: -

23

I dont think of myself as an older person but being trapped in an ageing body isnt fun. The consensus in our group was that no-one felt like an older person inside. One person described what could be seen as a spiritual journey, a growth: Theres certainly for me a sense of finding out who I am and who Im not, and accepting that. And enjoying the mystery and accepting that there is a lot of mystery in it all and not trying to know with my head everything. I think theres an awful lot in our hearts that we dont know how to listen to and I think part of my life has been learning to link up my head and my heart. In similar vein others spoke of what they had learnt about life, their increased confidence and their greater understanding of others: Someone else said that life was good, apart from health: a confidence I didnt have when I was young. An ability to speak my mind and write about things with which I am not happy. Others concurred talking about: Confidence, experience of life, still in a position to help others if needed. I have gone through difficult times and come out a little wiser and never judge anyone til you know them. Being more sensitive to others needs. Having greater empathy. The experiences over the past 55 years from age 15 have equipped me with a wide knowledge of life, and enabled me to help myself and many others with the needs of daily living. Experience of life and being able to offer help (even if only limited) to other people and still be able to speak and act for others who are not so fortunate, and being appreciated for doing so. Different people told us that this was a good time of their life: - they can help others - they are more satisfied with life - as well they feel more knowledgeable and can advise family, especially grandchildren - you have your memories; you can look back and remember good things - you know what life is all about and can be happy with yourself - I keep cheerful and think that I am lucky - the things that I always thought important no longer seem so - there is wisdom gained from years of experience

24

- Its the things Ive learned about life - I have the maturity to make decisions with knowledge Coping strategies For some there is a fine line between getting by or feelings of going under. Several people told us of the ways that they tried to manage: How does one cope with a husband that has very short-term memory? Is diabetic, needs 24hr care, age 82 years. Is incontinent, refuses to take painkillers. Sleeps all hours of the day. Awake most of the night. I am very tired, I need to watch him day and night. I only get out for 3 hours each Thursday afternoon, I pay for this. In addition to severe physical ill health / disability my husband has now been diagnosed with vascular dementia. For myself a prolapsed disc affected my sciatic nerve. Since then severe widespread arthritis, difficulty in walking, right arm shoulder not working, probably age related. Exhaustion. I cope thats what life is. John my husband is very demanding. I cope because my own life contracts more and more. He does have respite care a week every three months and this is an absolute godsend. By keeping strong and facing each challenge with an appetite. Also I have wonderful neighbours from where I lived before whom I can never ever repay for everything they have done (and will do) for me. Arent I blessed? I do my own thing. Very independent and friendly. Have to make your own life. People keep themselves to themselves. You have to get out and meet them. They wont come knocking on the door. One respondent who had lost her husband also relied on support from paid services she stated that along with the help she has received from friends she Now had a cleaner. Which makes life easier. Finding ways to manage was not always easy: Im getting more infirm and have to drive myself mentally to get up and go. I havent the energy I used to have and get tired quite quickly. I make myself get going, but have learnt to not fill up my day as much as I used to. I have also asked for help from my neighbours; if appropriate I ask relatives. Ive also learnt to say No and am withdrawing from various pointless responsibilities. But I am trying to remain involved. 25

Have suffered with health problems which have had an effect on my life, but this has galvanised my resolve. . Health problems but determined to win. Grim determination Have been a fell walker all my life, but walking (even with two sticks) is often painful now and distances are very much reduced. I have tried to forget the pain in my foot so the rest of my body can enjoy a walk. I also have a younger walking partner who will often turn and call to me Come on you lazy old git Its encouragement like this that keeps me going. (R60) Keep smiling it makes everyone wonder what you have been up to we have to do without other things buy cheaper food stuffs to meet the costs of outpatient weekly appointments With family problems - . Try to keep calm by going in my garden.

Some revelled in greater freedom: I can choose what I do, go out, stay in, do my hobbies, read, visit my neighbour on Friday evenings to watch DVDs, take turns in providing snacks, visit my daughter and two grandsons who are 21 and 13. She takes me shopping, garden centres, arts and craft centres, cinema, has me to dinner on Sunday if I choose to go. Just retired and therefore enjoying the complete freedom to do as we wish plenty of walking both locally and further afield, good eating and holidays both in the UK and abroad. Can also spend more time with family and friends and visit our caravan. I shall be 85 in a few weeks and I am very happy. My three sons are very good to me and my daughters in law are lovely. I am fortunate to be in good health, I read, am computer literate, and have my faith. I consider myself well blessed. Then there were those who were glad that the hard work of living had been done: Not having the worry of earning a living in todays uncertain job climate. Having finished work as the way things are now you are expected to do so many jobs for the pay you get, as management have to have the upper hand and they take things to the extreme. I feel sorry for the school leavers because they cant get jobs.

26

I wouldnt like to be young now, no jobs, housing problems. At my age I can enjoy myself, I have enough money. Good family, good friends, neighbours. Life is merry. Some people adapt the way that they manage their lives to continue for as long as possible with activities that they enjoy. Others develop new interests: One of the leads in one of the Age UK Lancashire sponsored performances at a dance show at the Dukes spoke about her performance: And I have to say that although I was not depressed, not run down, not down in the mouth at all before I got the part; I was going to the gym, I played tennis, I was going to the dance classes. I was in a routine; I had got sons and a daughter and having a lovely time. But since I have been in the dance, in this, Ive gone up, up, up! And I am 80 now. So Im ever so lucky to be able to do it all.

However there are worries about the future It is becoming increasingly clear that older people are becoming more worried about their futures. The image that is portrayed in the media of a generation today with good state and work pensions that is living well at the expense of younger adults may be true for those on higher incomes. There are increasing numbers of older people who are worried about their futures, and about the sort of support they will receive from the state if they need help. For some a feeling of being able to rely on the state in their old age has been eroded. Importantly, older people are unlikely to be able to supplement their incomes and may not have the energy to manage their futures. and of dementia The realization from our research that the family members of many people with dementia wanted to continue to do things together, to maintain their relationships, and they did not feel able to go out to places. They were unsure how welcoming people would be, and how they would manage. A very powerful and thought provoking presentation (the wife of an older person with dementia) - it has made me more determined and passionate to promote the needs of older people. In one meeting a group focused upon what might be done locally to improve life for people with dementia and their family members with ideas ranging from a campaign targeted at local GPs to raise awareness of dementia, to get them to listen and to be more aware of how they talk to people to setting up a local phone number that people could contact when they needed to talk.

27

At another performance at The Dukes, this time of Mindwalking, a member of the audience said how she appreciated the non-verbal acting and felt this conveyed distress powerfully. She saw how Alzheimer's affected the whole family: this was a revelation - Id not thought about that before. and in local communities Trying to develop an environment where: People feel a part of what is happening: being recognised, acknowledged and appreciated. Some describe this as neighbourliness others as feeling that you belong. This seems to be a key factor in creating resilience to cope with change. There are places to meet and talk: these must develop to match what different groups of older people want.

The value of community activists to stimulate developments There are many different styles of workers in communities: some act as a hub, providing information; others try to link individuals to others, whether to go out for a meal or to see a film. This research leads us to think that there is a continuing role for people who will play a part not only in developing but also in continuing to support local groups and activities. A key aspect of their job would be to play a central part in maintaining a continuing dialogue with older people and communities. A re-evaluation of priorities and styles of work in Age UK Lancashire 1. Age UK Lancashire will endeavour to find out better what older people want from the organization. This demands a different style of engagement with older people, going beyond asking questions and consulting to talking, listening and discussing. These are research type conversations to understand peoples experiences and what they want. There are questions that we have to ask, for example whether we impose on older people our views of how they are and what they want? 2. Recognising the different ways that older people manage their lives. For example when people talk about a problem such as loneliness, the natural response is to try to find an activity that sorts the problem, perhaps someone to come and visit or encouragement for the person to get out more. Another response is to help people reflect on the ways that they could manage times of being alone. Tellingly, whether or not aloneness is a preferred state, others live contentedly with themselves. Maya Angelou asserts in one poem: When you see me Sitting quietly like a sack Left on a shelf Don't think I need Your chattering I'm listening to myself.

28

3. Keeping in touch more effectively with people who use Age UKL services. The argument was that if people who used services were ill and dropped away, there ought to be continuing concern and involvement. 4. Making greater use of research in the organization to better understand and interpret what is happening. This demands a style of conversation in which the interviewer sets out to listen to rather than talk to a person. Reports not left to gather dust on a shelf The project team reported on the impact that poor transport has on older peoples lives at a conference in Preston. Following that two events have taken place: in one there was a lobby of Lancashire MPs at the House of Commons. In a second outcome, Lancashire county council has established a group to look at ways in which people can share cars when they want to get to events. Dominant images of successful old age One comment made to us stressed the role the part that Age UK Lancashire could play in influencing attitudes to ageing: So I think actually organisations like yours should be trying to teach the younger generations not to forget, to respect and have dignity towards older people and actually change their perceptions on what it means to get older and help to create a community . And then when people do get older and get left on their own theyre not on their own, theyre not institutionalised. People have talked to us about the ways that they attempt to manage their lives, and the ways that others support them. As we have reached the end of the project we have realised the impact of the dominant images that are held of successful old age. These images provide the framework by which older people look at their lives, thinking that they are doing all right or not doing well enough. In our society where everybody is subject to advertising and marketing it is essential that individuals recover the capacity to chart for themselves how to live, and what matters. Coping with the circumstances of our lives is in part about finding the resources within ourselves to manage change, and Age UK Lancashire may be able to play a part in helping people to reflect on their lives. We have learnt during the project from many older people as well as from those who plan and provide services. We ourselves are committed to action and are well aware of the frustrations that come when people are asked their opinions and nothing seems to change and nobody comes back to talk about what is going on. So Age UK Lancashire is determined that one of the outcomes from this project will be a continuing conversation with older people in Lancashire about hopes and dreams, and turning some of those into reality. We want to play a part in supporting older people to lead fuller lives.

29