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Improving the Quality of Life for Older People with Dementia Living


Dr Kathy Murphy, Ms Adeline Cooney, Professor Eamon O Shea. The study ... Give an overview of the research which was undertaken in Ireland ... – PowerPoint PPT presentation

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Title: Improving the Quality of Life for Older People with Dementia Living

Improving the Quality of Life for Older People
with Dementia Living in Long-Stay Care
Dr Kathy Murphy, Ms Adeline Cooney, Professor
Eamon O Shea
The study
  • Aim of the study was to explore the quality of
    life of older people living in long-stay care in
    Ireland from a number of perspectives.

Context and Complexity of Quality of Life
  • Quality of life is a multi-dimensional holistic
    concept, which cannot be explained solely in
    medical terms.
  • Quality of life also contains both subjective and
    objective elements (Gabriel Bowling 2004).
  • Lack of consensus on key domains
  • There is an evolving literature on quality of
    life for people in long-stay care, which has
    identified a number of important key domains
    including identity, autonomy, physical
    environment, social environment, connectedness
    and meaningful activity (Davies et al. 1999,
    National Council on Ageing and Older People 2000,
    Standing Nursing and Midwifery Advisory Committee

Literature Findings in relation to People with
  • People with dementia generally rate their quality
    of life as good or very good (James, Xie
    Karlawish 2005).
  • People with dementia report that family are the
    main sources of happiness and satisfaction in
    life. Being listened to and understood by their
    family adds to quality of life (Katsuno 2005).

Structure of Presentation
  • Give an overview of the research which was
    undertaken in Ireland
  • Identify quality of life domains for older people
    living in long-stay care generally
  • Identify specific issues for older people with
    dementia within each of those domains

  • Research Design
  • A mixed method research design was used for the
  • Three methods were employed (1) focus groups
    with 67 managers (2) a quantitative survey of all
    568 long-stay care facilities in Ireland and (3)
    qualitative interviews with 101 residents and 48
  • Focus on interview data as this was most relevant
    to older people with dementia but will present
    data from other methods where relevant.

  • Undertaken within 12 study sites in order to
    gather more in-depth contextual data and maximise
  • 101 resident, 48 staff interviews gathered
  • 15 telephone interviews with relatives.

Study Sites
  • Residential study sites (n 12) were chosen by
    random selection within strata to ensure
    facilities were typical of sectors.

In each study site
  • Research assistant was on site for a week
  • Gathered contextual data, identified residents
    and staff for interview, completed quantitative
  • Interviewers were on site for 2-3 days and
    gathered interview data from staff and residents

  • One hundred and one resident interviews were
    gathered across study sites. Interviews lasted
    between 15 minutes and 45 minutes. The sample was
    stratified to ensure that there was a mix of
    residents from each type of facility, residents
    who were newly admitted and those that had lived
    in the facility for longer than three months, and

Use of MEAMS
  • Initial decision to use Meams to screen people
    for suitability for interview, score set at 4 or
  • Changed this to 3 or above as research assistants
    when talking to people found that people with a
    lower score had good recall capacity if prompted
    and it was very possible to interview people with
    lower scores.
  • Found research assistant judgement more sensitive.

Data Analysis
  • Resident interviews were recorded and transcribed
    verbatim. The constant comparative technique was
    used for analysis (Stauss Corbin, 1990). This
    involved reading each transcript and assigning
    preliminary codes. Similar codes were then
    grouped to form tentative categories. A coding
    guide was then formulated and used to re-analyse
    the data. A process of continuous comparison
    enabled the collapse of categories and the
    identification of overarching themes

  • Questionnaire informed by the work of OConnor
    and Walsh (1986)
  • Pilot (n 30)
  • Distributed to all long-stay care areas
  • Overall response rate 62
  • Focus on physical facilities, personal services,
    numbers of staff, privacy, admission and
    discharge policies, numbers of and dependency of

  • Survey asked about numbers of residents who were
    displaying signs of confusion
  • Data therefore not just about those with a
    diagnosis of dementia and confusion was not just
    due to dementia.
  • gt30 residents displaying severe confusion all of
    the time, gt65 confusion some of the time

Residents with Confusion
Findings Quality of Life of Residents Living in
Long-Stay Care
  • Data analysis revealed four key domains of
    quality of life
  • Sense of self and identity
  • Care environment and ethos of care
  • Connectedness, social relationships and networks
  • Activities and therapies

Sense of Self and Identify
  • The theme of sense of self and personal identify
    focused on the extent to which residents could
    maintain a sense of self within their facility
    and included having personal space and
    maintaining appearance Four interrelated
    categories were identified self-expression,
    individuality, privacy and self-respect.

  • Residents were more likely to feel at home if
    they could express their identity through their
    personal appearance, memories, having personal
    possessions, and maintaining spirituality .
    Respondents who had a room of their own had an
    opportunity to create a personal space. Some
    respondents had put up pictures or brought a
    favourite piece of furniture with them while
    others who lived in open plan wards of 6-8 people
    had no opportunities to do this
  • I am very happy, like at home. This is my
    room, and this is my own furniture this was
    from my home . (LC1 Resident 12, Private)
  • Although I have a computer of my own I havent
    got it here because I cant you know there is no
    room, there is no space in this ward (GN1
    Resident 04 Public).

  • The extent to which long-term care facilities met
    or responded to resident respondents individual
    preferences and needs varied greatly. At one end
    of the spectrum, respondents were able to live
    their life as normal and did not feel constrained
    by rules or regulations. They could be
    themselves and felt they had the freedom to come
    and go as they pleased. At the other end of the
    spectrum, the routine dominated to such an extent
    that respondents felt they had little
    individuality. There was a sense that they had
    to fit their lives around the routine and obey
    the rules.
  • its just that its like a school, its very,
    how shall I say, regimented you know, you do a
    thing now if its handy for the hospital to do but
    if you want a cup of tea you couldnt get it in
    a democracy you have to do the best for everyone
    you know. (GN1 Resident 01, Public)

  • The degree of privacy enjoyed by resident
    respondents largely depended on whether residents
    had a room of their own or not. Respondents who
    lived in large open plan wards in public
    facilities experienced the greatest lack of
    privacy. Many reported that it was a struggle to
    have any kind of private life.
  • Ive a very nice little room, comfortable bed
    I have privacy if I wanted to go down and sit
    there or go down and listen to the radio or lie
    on the bed or whatever I like. (GN2 Resident 07,
  • I always had me own room till I came here,
    Theres nowhere to get away on your own. (PK1
    Resident 04, Public)
  • you only have a curtain separating you
    (GN1Resident 04, Public)

  • Acknowledging residents value was key to their
    self-respect. Staff drawing on residents
    expertise or life experience in some way, for
    example, asking them to help out or sit on a
    committee, gave the message that they still had
    something to offer. Recognition of achievement
    was also important to residents
  • Im now on the committee (responsible for
    setting up the garden) Im more on the
    administration end, I did a lot of gardening
    before I came and I won prizes Thats why I do
    that here and once they got it going here Im
    helping them, so theyre still getting it going.
    (GN1 Resident 01, Public)

Issues in Maintaining a sense of Self for
People with Dementia
  • We found that maintaining a sense of self for
    people with dementia required active management.
  • Self-expression Visual Cues, personal
    possessions, retaining a sense of history very
    important, biographical interviewing.
  • Individuality Working with Family and Resident,
    knowing whats important to a person
  • Privacy Balance with Safety, open plan ward
    particularly unsuitable if resident with dementia
    wanders or has sleep disturbance.
  • Self-respect Loss of roles

Physical Environment and Ethos of Care
This theme focused on elements of the physical
Environment and Ethos of Care. The structure of
the facilities including private rooms or wards
and facilities like a day room or sitting room
and the effect these have on privacy, social
activities and interaction. The ethos of care
focuses on issues such as choice and control and
organisational routines. Four categories were
identified as important within this overall
domain, namely physical resources and staffing,
promoting autonomy, promoting and maintaining
independence, and the care philosophy.
Physical Environment
  • The survey and interview data revealed that the
    physical environment in many facilities was
    unsuitable, particularly within large geriatric
    hospitals. In many facilities, particularly in
    the public sector, staff raised concerns about
    the suitability of the physical environment for
    residents with dementia. They suggested that
    buildings were unsuitable for people with
    dementia because there was no space, people had
    to remain by their beds and this impacted
    negatively on quality of life. Design issues
    were also highlighted, including colour, cueing
    and lighting issues for people with dementia.

Physical Environment
  • Open wards of 6-8, sometimes no day room
  • Difference in Public and Private - physical
    facilities better in private facilities.
  • Environment can constrain choice, reduce privacy,
    impact on what residents can do each day and
    social interaction.

Participant Views
  • patients get up in the morning and theyre
    sitting on their chair which is beside their bed,
    and the next bed is literally a couple of inches
    from them. Now the person on the other side of
    the curtain could be using a commode while this
    person is actually eating, because we dont have
    day rooms, so therefore everything is done in the
    one space (FG1G Focus Group Participant)
  • As you can see around its a very open ward
    area, its a very small space in terms of the
    environment, there is nothing of the notion of
    privacy, theres nothing of the notion really of
    a sense of choice either and that worries me a
    lot (PK1 Nurse 01, Public)

  • Staff were concerned that when the physical
    environment was constrained the resident with
    dementia was not able to exercise if they so
    wished and this may contribute to increased
    agitation and rising levels of aggression
  • there is no facilities at all for them, you
    know, its, they wander up and down the corridor,
    thats it, theres nothing for them to, to do or
    to, get them interested you know, cant sit and
    chat and there should be facilities, a lot of
    places have got certain rooms for people with
    dementia and all that, I would like to see that
    here for them as well, like, my feel is if
    theyre entitled to it in one place theyre
    entitled to it every place there are some purpose
    built facilities, structured in a circle and
    they can wander around all day( IHCA01, public)

Promoting Autonomy
  • Many residents identified autonomy as important
    for quality of life. Autonomy included the
    capacity to make choices and to be included in
    decision making. Residents wanted their opinion
    to be sought this included small things such as
    what to wear but some residents found these
    choices were difficult. Residents emphasised the
    importance of having choice within the day.
    Choices about the time they were woken, had
    breakfast, went back to bed, had meals and what
    they did during the day
  • there is one nurse and she has a positive craze
    for this cardigan and I hate it but she insists
    on my wearing it (YW4 Resident 05, Private)
  • you have breakfast a 6.30 because the night staff
    have to do it and they have 40 something people
    to deal with (LC1 Resident 07 Private)
  • you can stay in bed to 11 o clock if you like,
    they come to make your bed. You can suit
    yourself. You are your own boss kind of thing
    now (YW1 Resident 02, Private)

Promoting and Maintaining Independence
  • Many residents expressed the desire to maintain
    or improve their current level of independence.
    This involved doing what you could do for
    yourself, participating in exercise classes if
    possible, keeping mobile and trying to maintain
    your physical abilities. Residents suggested
    that it was important to do the things you could
    for yourself and described proudly what they did
    for themselves and what they needed help with.
    Some residents felt they were given the time they
    needed to participate in their care while others
    felt rushed. Residents across all facility types
    felt that care staff were very rushed and busy
    and were concerned about slowing things up.
  • They let me try and help myself as much as I can
    you know (PK3 Resident 09, Public)
  • I did get a lot of physio (in an acute
    hospital), I got it for an hour a day but when I
    went to long-stay care, no physio. Thats not
    right.I was beginning to pick up and it would
    have made a lot of difference (LCI Resident 7,

Staff and Physical Resources
  • Residents across all facilities perceived staff
    as extremely busy with limited time to complete
    all their care tasks. Some described having to
    wait for some time before getting attention.
    Many were very impressed by the dedicated,
    friendly, caring staff that looked after them on
    a day-to-day basis in all types of settings.
    Some considered staff as friends who shared
    information about their families and activities.
    Many resident respondents highlighted the great
    staff as the best aspect of the facility in which
    they lived..
  • when you get your breakfast and you might want
    to go to the toilet and you call the nurse and
    she would not come, then you wait and wait and
    then you call the nurse again, that nurse will
    say wait a minute well that minute could be an
    hour (GN1 Resident 06, Public)

Staff and Physical Resources
  • Staff often perceived that people with dementia
    had particular needs and they suggested that the
    staffing resource was not always available.
  • Well what Im finding hard at the moment is a lot
    of our admissions are people who have Alzheimers
    so this morning now we have 4 so theyre pacing
    up and down the room and you dont have time to
    keep your eyes on them and you cant treat, I
    mean as a physiotherapist its extremely hard to
    treat Alzheimers patient (GNPH01, Public)

Staffing Levels
  • Key differences in staffing levels between public
    and private sector.
  • Public more registered nurses, high staff to
    resident ratios.
  • Private more care staff lower staff to resident
  • From a nursing perceptive it is difficult
    nursing people with dementia when they are mixed
    with people who dont have this , there is a
    resident, and shell be trying to get out the
    door on you, this morning she said to me she lost
    her shoes, and she was looking at my shoes, and I
    said dont be looking at my shoes, I didnt
    steal your shoes (laugh), and I said Im sure
    your shoes are in the room. But she actually had
    put them in somebody elses room, you know. If
    we are busy, and they are wanting out, it can be
    hard, because, you know, one day she was trying
    to get out the door on us, and you had to be
    quick. But if you take her for a wee walk
    around, if it was good weather, a walk around
    the garden, I mean the grounds are quite nice
    here for, you know that helps (W3N02)

Care Philosophy
  • Individualised, resident inclusion, person
    centered care valued and implemented in some
    facilities. Staff training and development seen
    as integral part of doing work well.
  • we are trying to look at people as
    individuals, the respect and dignity and sense of
    humour, thats so important because people do not
    want to be a number in a bed (LC2 Director of
    Nursing , Private)

Facilities for People with Dementia
  • The majority of focus group participants stated
    that residents with dementia should not be mixed
    with residents who did not have dementia. They
    believed that neither group benefited from this
    mixing and recommended that residents with
    dementia should be cared for separately, in units
    that were purpose built and staffed by staff with
    appropriate expertise.
  • A few resident respondents voiced concern for
    their physical safety as some people with
    dementia could be physically violent
    occasionally. Some residents could not lock away
    possessions or lock their rooms at night which
    led some of them to fear for their safety.

Issues for People with Dementia
  • Physical Environment Matters for quality of
    life, purpose built units.
  • Staffing Resources Crucial to meeting particular
    needs and ensuring resident safety
  • Autonomy Giving Choice important
  • Independence Supporting person to do things for
    themselves, prompting, being with.

Care Philosophy
  • In some facilities, both public and private,
    respondents commented on the caring ethos and how
    this impacted on their care. In some facilities
    this ethos was based on resident inclusion in
    decision making, maximising resident capacity,
    facilitating choice and keeping the residents
    involved. In other facilities, care was described
    as routinised and focused on tasks.
  • youre woken up quite early in the morning So
    youre woken at 6 and breakfast isnt until 10
    past 8, its a long day, the nurses change at 6
    oclock and it wakes you up. So is there a
    routine here, there is yeah ok and is every day
    the same then, every day is the same, absolutely
    the same. the day is very long yeah, boring
    (GN2, Resident 02, Public)

Routine as a Strategy
  • Routine was not always seen as undesirable, some
    staff caring for people with dementia described
    it as a strategy in the day which may help.
  • I would say the majority of our patients would
    have some, level of forgetfulness or some level
    of dementia, that routine is really, really
    important to them a sort of a fixed, is it
    possible then for them to have choices within
    this, I am not saying that it should be a rooted
    schedule, but some sort of time lines is good for
    people, like lunch is at a certain time or
    whatever, is it possible for residents to have
    choices within that, like can people choose to
    stay in bed, an extra hour(BRADN1, Public)

  • The theme of connectedness to community and
    family focused on internal resident interactions,
    companionship, family relationships,
    inter-generational contacts and general links
    between the community and the residential
    facility. Older people identified having friends,
    good family who visited regularly, links with the
    community and good staff relationships as
    important to their quality of life. An analysis
    of the data revealed four interrelated
    categories connectedness, involvement and
    interest, resident-resident relationships,
    resident-staff relationships and family and
    community connections .

Connectedness, Involvement and Interest
  • This category focused on the extent to which
    residents maintained an interest in external
    events and current affairs. Some respondents
    were either too frail or ill for this to be a
    priority their physical comfort was their major
    concern. Among the fitter residents there were
    noticeable differences across sites in their
    general interest in and connectedness to the
    world outside the facility
  • Im able to keep in touch with the outside world
    with the paper ... (YW1 Resident 02, Private)
  • I couldnt tell you what day it is (GN1
    Resident 05, Public)

Resident-Staff Relationships
  • Resident respondents described staff they liked
    as friendly and interested in them. They
    valued opportunities to chat with staff and were
    particularly pleased when staff shared personal
    information as opposed to care related
    information only. This could be as trivial as
    what they did last night but to resident
    respondents this was a sign that they had forged
    a special relationship. It is possible that
    staff sharing this kind of information helped
    equalise the relationship as it mirrored the give
    and take of normal interaction and friendship.
    Continuity of staff made it easier for resident
    respondents to build a relationship with staff as
    it provided greater opportunity for chatting and
    sharing information.
  • Ive visited nursing homes before we came in you
    know, visiting neighbours and there was all,
    there was nobody talking to anybody Its
    different here, the, nurses come up there, they
    just come up for a bit of slag . (LCI Resident
    15, Private)

Resident-Resident Relationships
  • This category focused on resident relationships
    and the factors that influenced the level of
    interaction. In some facilities residents were
    friendly, tolerant of one another and there was a
    strong sense of collegiality. They clearly
    enjoyed one anothers company made the most of
    what was on offer by joining in the activities,
    laughed at one anothers jokes and viewed a
    falling out as a normal part of life. In others
    relationships appeared strained and respondents
    reported keeping to themselves.
  • we (residents) have a laugh you know its
    not like your family but you make them your
    family (PK3 Resident 05, Public)
  • Int Have you made friends here at all?
  • Some Not a whole lot, because this place is
    really for the poorer class and I dont like
    being stuck in with them because they think Im
    too, Im too swanky altogether for them. (YW5
    Resident 02, Private

Residents perspectives of Living with People with
  • Some resident respondents who were mentally alert
    tended to avoid those who were confused. Several
    issues seemed to impact on this behaviour. Some
    respondents were frustrated by having to answer
    the same questions or hear the same story over
    and over, or were disturbed by the repetitive
    behaviour of those with dementia. Others saw
    themselves as lucky because there were others
    worse off than themselves. At its most extreme,
    some respondents were not merely irritated by
    other residents with dementia but were frightened
    of them. There were instances where respondents
    had been attacked and hit.

Resident Care and Concern
  • Some residents understood and had real compassion
    for residents with dementia and tried to help.
  • Well you get to know them (people with dementia)
    and you feel sorry for them now, and well you do
    your best, you know, and theyll always say did I
    tell you this before and rather than annoy them
    you say no what was it it might annoy some
    people but I dont think it annoys anyone here.
    (YW3 Resident 01, Private)

Family and Community Connections
  • Family and community connections were also very
    important to respondents. Visits from family and
    friends were very important to residents. Visits
    helped maintain family bonds and kept the older
    person in touch with what was happening at home
    and in the local community. Connectedness to
    family and community was important in maintaining
  • I was living up the road and have a lot of
    friends around its far better than what other
    people have. my sister comes three times a day
    . (YW4 Resident 04, Private)
  • I would like to be allowed to bring my youngest
    (grandchildren) in . (YW5 Resident 02,

Connectedness Dementia
  • Family Vital link to the past fostering and
    maintaining relationships key
  • Links to the past Importance of photographs,
    biographical interview
  • Resident-Resident relationship Ethos of
    tolerance and concern but also appropriate spaces
    for social activities and privacy. May be useful
    to have resident education on dementia.
  • Care Staff Continuity of care crucial, important
    that staff know residents with dementia well.

Meaningful Activities
  • This theme explored the opportunities for
    residents to pursue meaningful and purposeful
    activities. It focuses residents perceptions of
    the activities available within long-term care.
    Respondents described the activities, if any,
    which were offered in their facility, the extent
    to which they participated in these and reasons
    they did or did not participate. Some also
    discussed activities they would like to pursue
    which were not currently on offer. Four
    categories were identified within this theme
    purposeful activity, therapeutic activity,
    outdoor activities and making activities work.

  • Some staff stressed the importance of not
    underestimating the capabilities of people with
  • Old age is not a sickness. Everybody that comes
    in here has a particular need, but the
    activities, if you develop a good programme that
    will suit, not just one group in the house,
    because sometimes you feel that all the
    activities can be attended by the one group,
    whereas if you have it varied, then, for example,
    the sonas, the hand massage, that suits the
    people that mightnt be in a position to
    participate in some of the other activities.
    Even though, youd be amazed at the people who
    have quite marked dementia, and on the anagrams,
    which is something that Ive learned, how quick
    they can spot the words!

Purposeful Activity
  • Purposeful activity focused on the way in which
    activities were structured, the extent to which
    residents were consulted in determining
    appropriate activities and the issues which
    impacted on residents participation. In some
    study site s there was a planned provision of
    activities which changed on a daily basis.
    Activities on offer included painting, bingo,
    dancing, singing, exercise classes, tai chi,
    watching T.V., cards, scrabble, and gardening.
    Some sites however had an extensive range of
    activities while other provided little .
  • just the same thing, the same day in and day
    outits boring but I dont like to say
    anything because if you say anything you are in
    the bad books altogether (GN2 Resident 09,
  • my best hobby of all is playing cards, I play
    four times a week with four other ladies (PK3
    Resident 02, Public)

Therapeutic Activity
  • This category focused on activities which were
    designed to contribute to the residents well
    being, independence and health. Such activities
    included physiotherapy, occupational therapy, art
    therapy, sonas and massage. Three therapies
    physiotherapy, occupational therapy and speech
    and language therapy were deemed as essential to
    maintaining resident independence. These services
    were not always available however.
  • Well I havent got physiotherapy for a long, long
    time. I do feel I need it. To straighten down my
    legs because you cant straighten them down. Well
    I mean the physiotherapy I was getting, and it
    just stopped, you know.( PK2 Resident 06, Public)

Outdoor Activities
  • Resident respondents who were ambulatory
    described the importance of getting out of the
    facility. Getting out included such things as
    going for a walk or shopping, visiting friends or
    family, outdoor events such as a barbeque, and
    day trips to places of interest. These
    activities enabled residents to mix with people
    outside the facility and were perceived by them
    as important in knowing what was going on
  • I go out. Sometimes in the summertime I go down
    to the shops, but Im not allowed out on my own.
    I have to get a nurse to come with me and she
    goes with me down to do the shopping and then we
    come back home again.(PK3 Resident 04, Public)

Staff Training
  • Many staff reported that they felt they did not
    have the skills to manage residents with dementia
    effectively. They were finding it increasingly
    difficult as they perceived the numbers of people
    with dementia were increasing and the challenges
    particularly of managing verbal and physical
    aggression appropriately. Staff had sought help
    from other colleagues but felt they were left to
    deal with the problems. They were concerned that
    their lack of knowledge and training could be
    exacerbating the problems.

Issues Raised
  • Care Environment Person centred, homely, well
    managed, resident involvement in decision making,
    daily routine which facilitates choice, physical
    environment, appropriate staffing and skill mix.
    Physical environment must be addressed. Need to
    consider best environment for people with
  • Sense of Self and Identify Ask residents what
    they want, resident committees a must, focus on
    promoting independence, structure for privacy.
    Consider biographical interviewing on admission.
    Address issues of safety through appropriate
  • Connectedness Really Important for Older people
    with Dementia, connection to family and friends,
    connection to community, staying in touch, family
    often the vital link to the past. Consider
    resident education to raise awareness. Staff
    training key issue as they themselves perceive
    they do not have the skills.
  • Meaningful Activities Need purposeful activities
    focused on resident interests, designed
    specifically to meet needs of people with