Background
Methods
Group composition and participants
Sampling
Data collection
Data analysis
National analysis
Cross-national analysis
Results
Description of the focus groups
Participants
People with dementia | Total | DE | IE | IT | NL | NO | PTc | SE | UK |
Number of focus groups | 14 | 3 | 2 | 2 | 2 | 3 | 1 | 1 | |
Number of participants | 51 | 10 | 7 | 6 | 8 | 9 | 4 | 7 | |
Number of female participants | 28 | 7 | 6 | 4 | 2 | 4 | 3 | 2 | |
Mean age, years (range) | 76 (54–96) | 68 (55–84) | 68.5 (54–88) | 80 (75–87) | 76 (64–85) | 75 (61–86) | 90 (82–96) | 75 (66–85) | |
Mean time since diagnosis, years (range) | 2.5 (0–10) | 2.5 (0–7) | 2 (1–5) | ≤ 1 | 5.5 (0–10) | 3.5 (1–6) | 3.5 (2–5) | 3 (1–6) | |
Living alone/with family member | 16/31 | 4/6 | 3/4 | 2/4 | 4/4 | 2/7 | – | 1/6 | |
Informal carers | Total | DE | IEd | IT | NL | NO | PT | SE | UK |
Number of focus groups | 21 | 5 | 3 | 2 | 2 | 2 | 2 | 2 | 3 |
Number of participants | 96 | 21 | 16 | 8 | 10 | 7 | 11 | 8 | 15 |
Number of female participants | 77 | 18 | 12 | 8 | 9 | 6 | 8 | 5 | 10 |
Mean age, years (range) | 63 (37–91) | 65 (47–83) | 64 (50–89) | 58 (49–70) | 77 (68–86) | 50 (37–66) | 59 (43–78) | 68 (56–91) | 66 (46–84) |
Mean caregiving time, years (range) | 5 (1–12) | 4.5 (1–10) | 7 (2–12) | 6 (2–10) | 5.5 (1–11) | 4 (1–9) | 4 (0–8) | 3 (2–7) | 4 (1–10) |
Relationship to person with dementia | |||||||||
Spouse | 47 | 10 | 9 | – | 10 | 2 | 4 | 2 | 10 |
Child | 42 | 8 | 7 | 8 | – | 3 | 7 | 5 | 4 |
Other | 7 | 3 | – | – | – | 2 | – | 1 | 1 |
Healthcare professionals | Total | DE | IE | IT | NL | NO | PT | SE | UK |
Number of focus groups | 20 | 4 | 3 | 2 | 2 | 2 | 2 | 2 | 3 |
Number of participants | 114 | 16 | 18 | 9 | 12 | 13 | 12 | 12 | 22 |
Number of female participants | 98 | 12 | 17 | 6 | 11 | 13 | 11 | 12 | 16 |
Mean age, years (range) | 45 (23–62) | 49 (42–60) | 42 (28–56) | 45 (26–52) | 42 (27–63) | 46 (25–61) | 41 (27–56) | 52 (44–62) | 42 (23–57) |
Mean working experience, years (range) | 16 (0.25–42) | 17 (3–30) | 12 (2–25) | 18 (1–26) | 17 (3–35) | 13 (0.25–30) | 12 (2–30) | 23 (7–42) | 12 (0.25–30) |
Professional backgrounds | |||||||||
Nursesa | 60 | 9 | 10 | 3 | 5 | 10 | 5 | 11 | 10 |
Social workers | 6 | 3 | 1 | 1 | – | – | 1 | – | – |
General Practitioners | 5 | 1 | – | – | – | – | 3 | – | – |
Other specialist physicians | 6 | 1 | 2 | – | – | – | – | 4 | |
Psychologists | 10 | – | – | 1 | 6 | – | 1 | – | 2 |
Othersb | 27 | 2 | 5 | 4 | 1 | 3 | 2 | 1 | 6 |
Findings
Categories and subcategories | |||
---|---|---|---|
People with dementia | Informal carers | Health and Social Care Professionals | |
1) Aspects related to the individuals involved | 1.1 Characteristics and situation of the informal carers | ||
• Attitude and beliefs towards formal care | • Being proactive • Mutual help between informal carers • Attitude and beliefs towards formal care and dementia • Personal motives, need factors & trigger situations | • Knowledge/information • Attitude and beliefs towards formal care and dementia • Emotions of the informal carer • Personal motives & crisis as a trigger • Financial resources | |
1.2 Characteristics and situation of the people with dementia | |||
• Attitude and beliefs towards formal care ο perceiving formal care as a threat to independence • Attitude and beliefs towards dementia/dealing with the disease • Being involved in decision making • Knowledge, information and experiences • Accepting the diagnosis & adaptation process • Being proactive/initiative of others • Personal motives to use formal care • Financial resources | • Attitude and beliefs towards formal care and dementia | • Attitude and beliefs towards formal care towards dementia • Emotions | |
1.3 Expectations of healthcare professionals and formal care | |||
• Lack of or uncertain expectations | • Lack of or uncertain expectations • Joint decisions and shared responsibilities • Sufficient information • Need-tailored support | • Firm diagnosis & reliable information • Emotional support • Understanding care needs | |
1.4 Experiences with the uptake of formal care | |||
• (Dis-)Satisfaction | • (Dis-)Satisfaction • Experiences towards the right moment of using formal care | • (Dis-)Satisfaction | |
1.5 Family structures and social environment | |||
1.6 Characteristics & strategies of the health and social care professionals | |||
• Attitude towards dementia, people with dementia and towards informal carers • Relationship with health and social care professionals | • Attitude towards dementia, people with dementia and towards informal carers • Competencies (knowledge and social competences) • Trial visit | • Attitude towards dementia, people with dementia and towards informal carers • Competencies (knowledge and social competences) • Strategies of the health and social care professionals | |
2) Aspects related to the (health and social care) system | 2.1 Availability of services | ||
• Lack of services • Staff deficits and insufficient financing | • Lack of services • External barriers in utilisation (limited resources, insufficient financing, non-transparent structures) | • Lack of services (also regionally) • Staff deficits and insufficient financing • Time constraints | |
2.2 Features of the services | |||
• Need-tailored services • Key contact person | • Need-tailored services • Key contact person • Cost factor | • Need-tailored services | |
2.3 Complexity of the system | |||
• Complex regulations • Disjointed nature of the system | • Complex regulations • Disjointed nature of the system | • Complex regulations • Disjointed nature of the system • Variability of the system/unclear roles | |
2.4 Continuity | |||
• Key contact point/key contact person | • Key contact point/key contact person | • Key contact point/key contact person | |
2.5 Networking & collaboration | |||
2.6 Role of the general practitioner (GP) | |||
3) Over-arching aspects | 3.1 Information | ||
3.2 Public awareness | |||
3.3 Early contact |
Aspects related to the individuals involved
Characteristics and situation of the informal carer
“It is, of course, a group that does not want to admit the problem, that there is something going wrong, and I see many cases where they try to conceal it as long as possible.” (Healthcare professional/NL).
“…I feel a duty to take care of her (the person with dementia).” (Informal carer/IT).
“But they just have to get used to the idea that they (professional helpers) have to come in (the person’s house).” (Informal carer/DE).
“The number of carers that approach us asking for support to assist their relative is increasing because they cannot miss work to provide care.” (Healthcare professional/PT).
“Often, it does come to crisis. People can be plodding on quite nicely. One of them goes into hospital and then it’s a crisis. It would be much more useful being planned for.” (Healthcare professional/UK).
“Unless there are others who see and hear what’s going on and share some of the responsibility, one is tense the whole time.” (Informal carer/SE).
“The problem is that the majority of us [carers] cannot afford private home care, and the services provided by the non-profit institutions do not meet our needs. For instance, support around the clock or during weekends is lacking.” (Informal carer/PT).
Characteristics and situation of the person with dementia
“We wish that she had much more help than she wants. But she doesn’t want to. That’s the case. Because she is not ‘ill’, and she is not ‘old’ either.” (Informal carer/NO).
“You’re diagnosed and thrown out into the big world. You don’t get told about any services.” (Person with dementia/UK).
“As a client, you must pay attention that you do not become too dependent […].” (Person with dementia/NL).
“For me, it’s important that my children can carry on with their own lives.” (Person with dementia/DE).
“I always said I did not want to be a burden to my family. My children have so many concerns...work, their own kids.” (Person with dementia/PT).
“When I got the diagnosis, I contacted the home health care nurse at once because I knew that I would need help sooner or later. And I started with the pills because we started to be anxious […].” (Person with dementia/NO).
Expectations of health and social care professionals and formal care
“If you don’t know what you are looking for, it’s hard.” (Informal carer/IE).
Experiences with the uptake of formal care
“The right time is when a person receives the diagnosis, basically.” (Informal carer/DE).
“For Mum’s sake, give her a dignified life, not leave her isolated. As relatives, we should have requested help much earlier.” (Informal carer/SE).
Family structures and social environment
“I think definitely accessing formal care is more often than not reliant on having somebody available, a carer, a friend, a neighbour, a child who is close by to encourage you to come forward.” (Healthcare professional/UK).
Healthcare professional A: “Exactly. ‘We’ve made a promise to each other’.”
Healthcare professional B: “‘We are going to be there for one another, no matter what happens. And now that’s what I’m sticking to’. You hear that relatively often, don’t you?” (Healthcare professionals/DE).
“Probably it’s me. I unconsciously […] feel the duty to take care of her. I mean, I feel the duty […]. I have always had a lot from my mother, being the only child.” (Informal carer/IT).
Characteristics and strategies of the health and social care professionals
“I said to my own GP, I actually don’t want to see these doctors anymore because they are patronising. They are not listening to the information I’m giving them.” (Person with dementia/IE).
“And generally, anybody I would see is nearly in the later stages of dementia. Very few are in the early stages, where, you know, we could have had a lot more conversations of preventable work, and a lot of it is to do with the stigma and the GP not wanting to take that route.” (Health care professional/IE).
“I told the medical team that I was available to help with my father and explained to them that my presence soothed him, but they said it was not necessary.” (Informal carer/PT).
“[…] when the patient comes to our attention, it’s a strategic moment from all points of view […] So, this moment is a determining moment, even if the patient, or the relative, decides ‘I stay or I go away’.” (Healthcare professional/IT).
“It is so good to talk to the dementia nurse when I am sad. She makes me smile.” (Person with dementia/NO).
“I always try to tell them [the relatives], ‘If you collapse tomorrow, you won’t be helping your relative whatsoever. He’d have to go into a nursing home straightaway. So you must ensure that you get some relief’.” (Healthcare professional/DE).
Aspects related to the health- and social care systems
Availability of services
“The criteria for social services seem to be getting steeper and steeper. […] If they do an assessment, they’ll say well you don’t have sufficient needs for us to get involved.” (Healthcare professional/UK).
“And being able to have that time is also very positive for us as staff because then we are relaxed too and really take our time.” (Healthcare professional/SE).
Features of the services
“The experience for the person with dementia arriving in a respite setting can be very traumatising for them. They know that ‘I’m not in my own home, I’ve been brought here because Mary or John wants to go on holidays or they just need a break’ […].” (Healthcare professional/IE).
Complexity of the system
“… those safe key boxes. Somebody recently said that they had given the number to 13 people. Would you give your number and the key access to your house to 13 people?” (Healthcare professional/IE).
Continuity
“The best thing I know is when we come in so early that it is not necessary to bring in anyone else yet. When one actually can make a difference […] in relation to preparing for what’s to come.” (Healthcare professional/NO).
“Well, I think a key worker role. I think a key worker role and a point of contact. So in other words, every time I give a diagnosis in the clinic, I should be able to say, ‘Your point of contact is X.” (Health care professional/IE).
Networking and collaboration
“The network should simply work better. Often, the first way is to the neurologist or physician. But this has to be better coordinated.” (Informal carer/DE).
“It is so good here because we all work so close to one another, so you can go to the care administrator and ask, Is this person on the register here? If not, it may be relevant soon.” (Healthcare professional/Sweden).
The role of the general practitioner (GP)
“I have to say, when I went to him [the GP] and I said, ‘I’m a bit worried about [husband’s] memory,’ do you know what he said to me? ‘Yes, the last time he was with me I thought there was something strange.’ Now the last time could have been six months before that. But he didn’t think it was worth his while to pick up the phone and say, ‘Do you think there’s anything funny going on with your husband?” (Informal carer/IE).
Overarching aspects
Information
“First, they [informal carers] don’t know, “Where should I go? Who should I ring?” They know that it exists, but how does one do it [apply for formal care]?” (Healthcare professional/SE).
“They have to have known what was going on. But nobody ever approached us.” (Informal carer/IE).
Public awareness
“Everyone talks about AIDS, tuberculosis and other diseases, but when it comes to Alzheimer’s, they say, Oh, the forgetfulness, it is part of the ageing process”. (Informal Carer/PT).
Early contact
“As early as possible, simply so that one can think about which system should be set up, what the relatives can realistically cope with. As early as possible.” (Healthcare professional/DE).
“[…] They have to have known what was going on. But nobody ever approached us.” (Informal carer/IE).
“The right moment to start care is a combination of the estimated risk of danger and especially: what is the quality of life of this person with dementia?” (Healthcare professional/NL).