Improving the Quality of Life for Older People with Dementia Living

1
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
2
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.

3
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
  2001)

4
Literature Findings in relation to People with
Dementia

• 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).

5
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

6

• Research Design
• A mixed method research design was used for the
  study
• 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
  staff.
• Focus on interview data as this was most relevant
  to older people with dementia but will present
  data from other methods where relevant.

7
Interviews

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

8
Study Sites

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

9
In each study site

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

10
Interviews

• 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
  age.

11
Use of MEAMS

• Initial decision to use Meams to screen people
  for suitability for interview, score set at 4 or
  above.
• 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.

12
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

13
.
Questionnaire

• 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
  residents.

14
Context

• 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

15
Residents with Confusion
16
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

17
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.

18
Self-Expression

• 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).

19
Individuality

• 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)

20
Privacy

• 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,
  Public)
• 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)

21
Self-Respect

• 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)

22
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

23
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.
24
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.

25
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.

26
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)

27
Facilities

• 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)

28
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)

29
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,
  Private)

30
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)

31
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)

32
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
  ratios.
• 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)

33
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)

34
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.

35
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.

36
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)

37
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)

38
Connectedness

• 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 .

39
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)

40
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)

41
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

42
Residents perspectives of Living with People with
Dementia

• 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.

43
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)

44
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
  wellbeing.
• 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,
  Private).

45
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.

46
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.

47
Activities

• Some staff stressed the importance of not
  underestimating the capabilities of people with
  dementia
• 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!

48
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,
  Public)
• my best hobby of all is playing cards, I play
  four times a week with four other ladies (PK3
  Resident 02, Public)

49
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)

50
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)

51
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.

52
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
  dementia.
• 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
  environments.
• 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
  dementia.