Faculty of Medicine | Lund University

Fruitful talks about the future of dementia care at home


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The first doctoral student linked to SWEAH has presented her thesis. It happend on February 16 in Lund and offered a fruitful discussion about the future of home care for people with dementia. At a SWEAH-lecture the theoretical puzzle fell into place for Christina Bökberg, registered nurse and lecturer at Lund University.

On February 16, Christina Bökberg became the first SWEAH PhD-student to defend her thesis. Title: Care and support at home for the person with dementia. Structure, processing and outcomes

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- What I mainly want to use the time for now is to discuss what we can do with your results. We have an challenging future ahead with an aging population, opponent Annika Kihlgren started, registered nurse and professor of nursing science at Örebro University.

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Christina Bökbergs thesis builds on a previous European research project - Right Time Place Care. A large cross-sectional study in eight European countries, where the flora of different health care interventions at home aimed at people with dementia have been identified and analyzed.
The thesis is based on this extensive quantitative data and then builds on, with own qualitative studies including in depth interviews. The focus is on Swedish conditions in dementia care at home. As well professionals, relatives and dementia patients themselves have been giving their views on the matter.
Found some gems
- I think I have found a couple of gems. For example, that communication and procedures in the care chain works well initially but is lost later on. Why not use the same forms and procedures even at a later stage? Christina Bökberg asked.

The thesis shows that health care efforts are most intense and best functioning in the initial and palliative stage of the treatment. In between interventions were sparse and a heavy responsibility was placed on the relatives.
Daytime activities highly valued
The transition from the initial official care to day center activities went smooth. The persons with dementia and their relatives also put great value in the day centers efforts. The activities was seen as individualized and a factor that made a longer stay at home possible for the dementia patient.
But moving on in the care chain when the day center no longer was enough, for example to a nursing home, was not so smooth. Communication and procedures between the parties involved was unsatisfactory and the experience of the day centers got lost.
Continuity important
- Day centers play an important role. They provide early documentation of what the person likes and is interested in. Unfortunately, all this documentation disappears later on. The day centers continuity in their staffing situation represents another important factor. This is something that the healthcare lack today, Christina Bökberg stated.
Annika Kihlgren concurred.
- We need to take more advantage of the day centers experience. Daytime activities puts the dementia patient on stage, it is really a question of person centered interventions.
Also flexibility is required
- And for home care to be person centered, the staff must adapt itself to every home. We need both continuity and flexibility, Christina Bökberg pointed out.
She continued:
- Skilled personnel is also essential for good health care. Today, for example, completely untrained staff occur in care at home. This mix of inadequate procedures, lack of communication skills and competence puts the dementia patients at risk of not getting the person centered care they should have. Here the healthcare needs to improve, Christina Bökberg said.

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Relatives' participation is also a prerequisite for effective communication. How can we strengthen the relatives? Annika Kihlgren wondered.
Christina Bökberg emphasized that even if the communication and initial practices of care providers worked well in the beginning knowledge of all available treatment options were not distributed to the patients or their relatives. If the relatives had a better overview of possible treatments it would strengthen them, Christina Bökberg reasoned.
A smörgåsbord of possible actions
- There is a smörgåsbord of possible actions, but there is a cloth covering some of the dishes. The activities are available but they are not offered, Christina Bökberg said.
Annika Kihlgren objected.
- At the same time, I believe we can often be to swift to offer several options. The question is whether it is right? Perhaps we should increase the quality of the treatments offered instead? It is difficult for two 85-year-olds, where one of them suffer from dementia, to choose between a lot of options.
- Yes, that is true, it is not easy to make a choice if there is a lot to consider, Christina Bökberg concurred and continued:

Early diagnosis central
- We must reach out with information about that the relatives are entitled to relief. Care givers also needs to act in a early stage, before the situation becomes chaotic. Too many people today develop dementia in secret. It is therefore essential with diagnosis at an earlier stage, Christina Bökberg pointed out.

Annika Kihlgren wondered what this under-diagnosis might be due to.

Blinds and compensates for symptoms
- Dementia is seen as a mental illness and may be something that you are ashamed of. Relatives can therefore blind and compensate for symptoms. But the care givers should also tackle this issue. It is easy to push aside the warning signs in the pressured health care organization of today. The staff, particularly the physicians, need to be more alert and pay attention to early signs of dementia, Christina Bökberg said.

Overall satisfaction
The thesis also looked at how people with dementia and their relatives experienced home care. Overall they were satisfied. They felt that there was a holistic approach in operations and particularly appreciated the honesty of the staff.

However, the objective analysis of health care interventions landed in the conclusion that efforts aimed at fall prevention, as well as pain and nutrition assessments, needs to be strengthened and expanded.

Lawton's press-competency model
- It is an interesting approach to link your research questions to Lawton's model, Annika Kihlgren emphasized.

Lawton's press-competency model describes the balance between individual skills and the pressure/support of the environment. This means that the less skilled/competent, or the more vulnerable a person is, the greater impact the environment has on the individual.

SWEAH got the theoretical puzzle in place
- I did not really have the necessary theoretical underpinning for my thesis but through my participation in SWEAH Lawton's model was introduced to me during a lecture and then everything fell into place, Christina Bökberg told.

The model has been used to gain a deeper understanding of the capacity of formal care services to adapt to diminishing competence/skills and increased assistance needs of dementia patients. Though, the concept of competence is not easily defined.

A problematic concept
- Where should the line be drawn between skills and competence? Annika Kihlgren asked.

Christina Bökberg agreed that it is a difficult concept. She has put a lot of effort to find her interpretation but admitted that she could have been even more clear about the definition. In her thesis the definition is relatively broad.

- For example, I see being able to manage your daily hygiene as a competence, Christina Bökberg said. 

Positive to analysis group
Regarding the analysis of collected data Annika Kihlgren was pleased with Christina Bökbergs decision to let more experts have a look at the material. She was, however, critical to that only nurses participated in the analysis group.

- It is true, more perspectives might certainly have been able to influence the results. For example, from a physical or occupational therapist, Christina Bökberg said.

Final summary
Finally Annika Kihlgren summed up the thesis strengths and weaknesses.

- It is a solid piece of work, addressing a very urgent topic for the future of society. The mix of qualitative and quantitative methods is good with both in depth interviews and analysis of a large European data material. The weakness lies in that the role of relatives should have been highlighted more.

Christina Bökberg concurred with the criticism and then it was time for the examination committee to make their comments.

Ingrid Hellström, registered nurse and associate professor of palliative care at Ersta Sköndal University College, returned to the definition of competence.

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- It can also involve emotional competencies and they may be intact, she stressed.

- That I agree on and I mean that we should work to strengthen all competencies that are left, Christina Bökberg replied.

Maria H Nilsson, registered physical therapist and associate professor of physical therapy at Lund University, posed the question of what Christina Bökberg would have done differently methodologically if she had the opportunity.

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- I would have broadened the selection of participants in the studies. It would have been interesting to look at dementia patients without relatives. I would also try to find a pain test aimed at people with dementia.

However, for comparable results the thesis approach has been guided by the choice of methods in the Right Time Place Care-project.

Sölve Elmståhl, registered physician and professor of geriatrics at Lund University, informed about the National SNAC-study where the group of dementia patients without relatives is represented.

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He asked how Christina Bökberg had reasoned about the fact that the thesis test of perceived quality of life showed no variation.

- This may be due to a ceiling effect, that the scale had few options and therefore did not show any nuances. Now the participants estimate their quality of life very high, Christina Bökberg replied.

However, again the conditions was set by earlier studies. After the examining committee had met, it turned out that they were satisfied with Christina Bökbergs answers and the thesis was approved without comment. A traditionally dissertation mingle followed.
Text and photo: Erik Skogh

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