De beleving van oudere personen met dementie in een beginstadium E. Steeman, B. Dierckx de Casterlé, M. Grypdonck, J. Godderis, J. Tournoy
Beste voorzitter, beste juryleden, beste allen, dank u voor jullie aanwezigheid en welkom op de voorstelling van dit doctoraat. In het komende half uur zal ik jullie meenemen in het verhaal van onze studie naar de beleving van oudere personen die leven met dementie in een beginstadium.
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Inleiding • Dementie: spectrum klinische syndromen, veroorzaakt door diverse aandoeningen van de hersenen • Eén van de meest voorkomende (mentale gezondheids)aandoeningen bij ouderen • Diagnose in een vroegtijdig stadium → pro-actieve zorg
Dementia refers to a spectrum of clinical syndromes, caused by different diseases of the brain. It is one of the most prevalent mental health problems among older people. Diagnosis of dementia in an early-stage has gained increasing attention, not only because pharmacological treatment to delay disease progression is most effective in the early stages, but especially because it allows for pro-active care. Now, what is early-stage dementia and what is pro-active care.
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Inleiding • Dementie in een vroegtijdig stadium – Zelfstandig wonen is mogelijk (mits wat ondersteuning) – Zelfstandigheid bedreigd/uitgedaagd door cognitieve beperkingen en/of gedrags – en gemoedsveranderingen, die interfereren met meer complexe activiteiten van het dagelijks leven, en vooral met werk en sociale activiteiten – Basis activiteiten van het dagelijks leven zijn niet of bijna niet aangetast Global Deterioration Scale Stage 3 and 4 (Reisberg et al., 1982); Clinical Dementia Rating Scale 0.5 and 1 (Hughes et al., 1982); DSM-III-R (APA, 1987) and ICD-10 (WHO, 1993) definitions of mild dementia
There is no standard definition of early-stage dementia. From several definitions of dementia in an early-stage it could be derived that it is a stage in wich independent living is still possible, although some assistance may be required. This independent living, however, is challenged by cognitive deficits and/or behavioural and mood changes, that interfere with more complex activities of daily life, such as shopping, cooking, handling finances, and especially with work and social activities. Basic activities of daily living, such as eating, toiletting, moving around, are not or only slightly impaired.
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Inleiding • Pro-actieve zorg – Goed getimed: • Zorgdiagnose moet starten bij het eerste contact i.v.m. ziektediagnose • Aanpassing over een langere periode mogelijk maken
– Gepast: • Gericht op welzijn, plezier, waardigheid en autonomie (empowerment) • Living well: een goed leven leiden ondanks dementie ∼ het leven boven de ziekte uittillen (Grypdonck, 2005) Nederlandse Vereniging voor Klinische Geriatrie (2005); Robinson, Clare & Evans, 2005); Moniz-Cook & Vernooij-Dassen (2006); Moniz-Cook et al. (2011)
Pro-active care is well-timed and appropriate care for these persons with early-stage dementia and their family. Well-timed means starting the care diagnosis at the first contact in the diagnostic process, providing ample time for active participation of the person with dementia in their care planning, for education of the person and of their family, which will allow them to access appropriate support and treatment to adjust and adapt over a longer period of time. Appropriate care means that it should be aimed at well-being and pleasure, or in general on quality of life, with support of dignitiy and autonomy of the person with dementia. It should empower the person with dementia. In other words: it should allow people with dementia and their family to live a good life in spite of dementia, or referring to Grypdonck: to lift life above illness In correspondence with Mieke Grypdonck’s lifting life above illness
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Doelstelling • Komen tot een beter begrip van leven met dementie in een vroegtijdig stadium – Verkenning van hoe deze mensen betekenis verlenen aan en omgaan met het leven met dementie, welke veranderingen doorheen de tijd optreden en wat deze veranderingen uitlokt
→Theoretisch model (interpretatieve theorie) →Uitbouwen van kennis dat inzetbaar is in de proactieve zorg aan personen met dementie
And that is what whas the objective of this study. We aimed at providing a better understanding of what it means for older people to live with early-stage dementia. We aimed to explore how these people come to understand and cope with their challenging life due to dementia, which changes may occur over time and what may trigger these changes. We aimed to develop a theoretical model, more specifically interpretative theory with a focus on providing understanding. We hoped that this theoretical model could expand current knowledge to a level that it can be easily translated and used in the daily practice of pro-active nursing
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Methode • Longitudinaal constructivistische grounded theory benadering (Charmaz, 2000 & 2006) • Doelgerichte steekproef: via geheugenklinieken – Personen met dementie: • ≥ 65 jaar ; thuis wonen; recente medische diagnose van dementie (< 3 maanden ); beginnende dementie: Clinical Dementia Rating (CDR) (Hughes et al. 1982) 0.5 (questionable dementia) or 1 (mild dementia) – Familieleden: • Zorgen voor de persoon met dementie (niet verder gespecificeerd)
We performed a qualitative study and we used a longitudinal constructivist grounded theory approach Qualitative research offers possibilities to enter the insider perspective, to reconstruct reality from this insider perspective. Qualitative research aims at studying a subjective world and the constructivist approach assumes the existence of multiple truths and realities in this subjective world. It also assumes that meaning is constructed in interaction, so the interaction between the researcher and the participant is important. The researcher needs to be reflective about his own attitude and preconceptions and about the interaction and power relationships as these all may have an influence on the constructions of meaning.
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Methode • Doelgerichte steekproef: – 20 personen met dementie– 17 in de longitudinale studie (25 familieleden) – Variatie in kenmerken: • • • •
Vrouwen en mannen CDR 0.5 en CDR 1 Leeftijd: range 69-91 jaar Diagnosis van dementie: Alzheimer’s disease, vasculaire dementie, gemengde dementie, (sub) corticale atrofie niet verder gespecificeerd • Woonsituatie (aleen – met anderen) • Familieband (zoon, dochter, echtgeno(o)t(e), nicht) • Beroepsloopbaan
– Progressie van de aandoening bij 14 participanten
We were able to include 20 people with dementia in the study and 25 family members. 17 participants with dementia could be included in the longitudinal study. Our sample had a variety in characteristics with the presence of both genders, although we had a large majority of women, both Clinical Dementia Rating scores, about half 0.5 and half 1, an wide age range between 69-91 years, different diagnosis of dementia, with Alzheimer’s disease being the most prevalent, but also a substantial number of participants with cortical or subcortical atrophy which remains vague in terms of diagnosis We had a variety in living situation with half of the persons living alone and the other half with others; a variety of kinship ties among the family members, and a variety in former occupation such as housewife, farmer, trader, politician In the longitudinal study we could discern progression of the disease in 14 participants
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Methode • Open diepte interviews (74) • • • •
Met de persoon met dementie (30) Met familie (21) → context informatie Apart en/of samen (23) Bij de persoon thuis
• 3 tot 4 interviews, tijds-periode: 1 - 1,5 jaar • Constante comparatieve methode (Glaser & Strauss, 1967) + narratieve analyse (Cortazzi, 1993) • Longitudinale analyse – Interviews per participant over de tijd – Interviews van participanten met CDR 0.5 t.o.v. interviews participanten met CDR 1
We performed a total of 74 open in-depth interviews, 30 with the person alone, 21 with family members alone and 23 with both the person and the family member together. Our focus was on the lived experience of the person with dementia and the interviews with the family members served as context information. We strived to have 3 to 4 interviews per person over a time-period of one to one and a half year Data were collected between november 2001 and July 2003
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Methode • Maximaliseren geloofwaardigheid: – Data triangulatie – Analyse triangulatie – Onderzoeker triangulatie • onderzoeksteam • Peer debriefings met experten in dementie en in kwalitatief onderzoek – Memo’s – Audit trail
To maximize the trustworthiness of our findings we used several measures: Such as data triangulation (interviews from participants, from family members, observations); analysis triangulation (constant comparative method and narrative analysis); researcher triangulation: two persons performed the interviews, the principal investigator coded all the interviews, two additional researcher coded part of the interviews, and we had several debriefings with experts in dementia and qualitative research We used memo’s of thoughts and our meaning making; and we kept an audit trail of the several steps that were taken in the study
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Resultaten • Drie grote fases: – Positief verhaal – Model over (een strijd om) van waarde (te) zijn – Behoud van waardegevoel
The data analysis and results comprised three major phases starting at the finding of a positive story, and the quest to better understand this story that lead us to a deeper level of analysis and resulting development of a model of a struggle to being valued, and in the longitudinal analysis we discovered the possibility of maintenance of being valued in spite of disease progression
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Positief verhaal • Onverwacht positief, maar eerder oppervlakkig verhaal: • Minimaliseren van geheugenproblemen • Benadrukken van competenties
→ vervormd beeld van de werkelijkheid door dementie ?
People told us an unexpected positive but rather superficial story in which memory problems were minimzed as well for their causes, manifestations or consequences. And remaining competencies relating to still knowing, still doing and still being were strongly emphasized. This story could be easily interpreted as a distorted story of reality due to dementia and not to be taken seriously.
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Positief verhaal • Een positief verhaal over ‘van waarde zijn’ – Van waarde zijn voor jezelf
dingen nog kunnen doen, weten, nog zijn
tevreden zijn met het huidig leven ondanks de beperkingen
– Van waarde zijn voor anderen
geliefd zijn, gekend zijn - gewaardeerd worden
onafhankelijk zijn - zorgend zijn
– Gelinkt aan heden en verleden, weinig aan toekomst
→ ‘Van waarde zijn’ als meer centraal in de beleving dan de geheugenproblemen
Being valued can mean experiencing self-worth, which was seen in expressions of meeting their current life expectations and being content with the present life. Or being valued was also conveyed in feeling valued by others, being families and friends or by society. For example this could be because of past life achievements for which this person was rewarded with honours or care today or because the person was still helping others. Expressions of being valued were related to the past and present and little to the future. We could conclude that being valued is more central in the lived experience than memory problems or other disease related problems. But we wondered if this was all the meaning that there was to be gained from the positive story.
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• P: … Ja, en al mijn kinderen (…) als ze weten dat er iets is, dan doen ze het onmiddellijk. Dus ik kan niet beter zijn. (…) Maar ik wil dat niet uitbuiten. Ik wil zelf(standig) zijn, wat ik ben. Ik wel echt zelf(standig) zijn. Maar dat is wat ik ben. Ik ben daar zeker van. (…) (Int. 3.1, 72-jarige vrouw)
This is an example of a women stressing her independence.
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Een positief verhaal ? • Contrast met observaties, verhaal van de familie, literatuur • Opvallend benadrukken → willen overtuigen • Uitdrukkingen als ‘nog niet’ of ‘als het maar blijft zoals het is’
→ implicit verhaal → narratieve analyse: • Analyse van interviewstijl → deficiet beeld van dementie • Negatieve case analyse → ‘niet meer van waarde zijn’ • Balanceren tussen van waarde zijn en niet meer van waarde zijn → ‘identiteitscrisis’ (Bergsma, 2002)
We questioned whether life with dementia was really experienced as positive as the stories made us belief. We questioned it as it was in contrast with observations and expressions of memory problems during the interviews, in contrast with the story of the family and in contrast with findings from literature review from which we gained a picture of primarily loss and suffering. Moreover there was a striking emphasizing of positive aspects, as if trying to convince the interviewers. For example one person emphasized repeatedly that she was normal as thousand others. We also frequently encountered expressions such as ‘not yet’ or ‘if only it can stay as it is’ which may point to awareness of problems or anticipation of them Narrative analysis looks at how the story is told, when and possibly why All these aspects led us to conclude that the positive story is an implicit story and we used narrative analysis to explore its meaning. Narrative analysis assumes that narratives are not only reconstructions of the past, but they may tell us something about meaning making of the present and anticipation of the future. Expressing awareness
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• L: Ze bestempelen met als abnormaal, maar ik ben niet abnormaal. Ik kan lezen, ik kan schrijven, ik kan rekenen, ik kan vanalles, ik hoor alles, ik begrijp alles. Dus ik begrijp niet wat er abnormaal aan mij is. En daarom ben ik stil. Ik zeg nooit iets. Dan kan ik ook niks verkeerd zeggen. Maar ik voel mij verlaten van iedereen. • …. • L: ... Maar er zijn dagen dat ik twijfel aan mijn verstand (Int. 9.2)
For example in this citation this woman stresses her competences with much emphasize, mainly in respons to a feeling of worhtlessness imposed by other, although she admitted that she experienced some lack of self-worht
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Een positief verhaal ?
We also saw that admittance of problems was almost immediately followed by minmising of problems or stressing of competencies. In other words we saw a continous balancing between being valued and becoming worthless. This balancing behaviour is also seen in the concept of identity crisis by Bergsma. This concept of identity crisis explains that this balancing behaviour seen in chronically physically ill people is an indication of a search to regain an balanced identity in respons to the illness’s threaths to one’s identity Hence the positive story and the balancing between being valued an being worthless could be an expression of a struggle to remain being valued and a need to adjust/repair idenity in respons to perceived threats to their value. These people need to find an equilibrium between maintenance and loss and the positive story is an important coping mechanism in the struggle to remain being valued.
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• X: Omdat ik zeg: ik heb een normaal leven, volgens mij. Ik ben het gewoon zo. • I: En je zou er niks aan willen veranderen ? • X: Natuurlijk, als ik het beter zou kunnen maken, zou ik het beter willen. Als ik mijn geheugen terug tip top zou kunnen krijgen, dat zou ik willen, dat ik terug alles kan herinneren. (int. 8.2)
The illustration of this PhD is not randomly chosen. It refers to the lady with the bike, as we called one of our participants. She admits having dementia and memory problems, but she blaims it on the dead of her husband and the memory problems don’t really bother her. She’s not bothered if she buys marmelade and then discovers that she has already two jars of marmelade. She says that others often tell her that she repeats the same question or story several times, but a very smart of hers still needs her help. Her daughters blame her that she is not attentive enough, but she indicates that she still helps her daughters with housekeeping, although it may not be to their satisfaction and she blaims that on differences between generations. Her bike is her freedom, she says. She loves to bike, she doesn’t now how, but she always gets to her destination. And she repeatedly says she prefers to bike on her own, determining her own pace. Her daughters call it aimless riding. If her daughters would’nt complain, there would be no problem. But although there seems to be no problem, and as she says here, her life is normal to her, she would change it and reverse her memory problems if she could. This may indicate that her memory problems pose more of a treath than she can admit.
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Oppervlakkig
POSITIEF VERHAAL
doel
VAN WAARDE ZIJN
Minimaliseren van problemen
Strategieën
Benadrukken van competenties
Zelfwaarde ervaren Zich waardevol voelen voor anderen
BALANCEREN
WAARDELOOS ZIJN
Gebrek aan zelfwaarde ervaren Zich waardeloos voelen voor /door anderen
GEVECHT OM VAN WAARDE TE BLIJVEN
bedreiging
In de diepte
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Behoud van waardegevoel • Longitudinale analyse: – Verkennen van de dynamiek van het concept en model over (een strijd om) van waarde (te) zijn. – ∼ behoud van identiteit ?
• Longitudinale gegevens: – Ondersteunen hypothese van behoud van identiteit ondanks vooruitgang van de ziekte – Twee vormen van behoud van identiteit: • Van waarde zijn om wat je doet • Van waarde zijn om wie je bent
In the longitudinal analysis we explored the dynamics of the concept of being valued and the model of struggle to being valued and we tried to explore if one could maintain identity despite progression of illness. Our longitudinal data were supportive for maintenance of identity and we identified two forms of preserving identity: being valued for what you do and being valued for who you are.
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Behoud van waardegevoel • Van waarde zijn om wat je doet – Competent genoeg zijn om de controle te houden over je leven – Van waarde zijn omdat je voldoet aan de verwachtingen van de maatschappij – Functioneren, onafhankelijkheid, autonomie als belangrijke elementen van identiteitsconstructie
Being valued for what you do refers to being competent enough to be in control of your life, fulfilling perceived expectations of society. In this concept functioning, independence, and autonomy are important elements of identity construction.
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•
I: Je zei me laatst dat je dochter soms in je kleerkast neust. Dat ze er een blouse uitnam.
•
X: Ja, ik dacht er net aan. Ik kan deze blouse nog eens dragen. Het is gewassen, weet je, ik hang er geen vuile blouses in. Maar het kan gebeuren dat ik een plek niet gezien heb. Ik draag geen vuile blouses. Maar mijn dochter is heel correct, ja. Vorige keer dacht ik nog dat ik de kast op slot zou moeten doen, ze moet geen blouses voor mij wassen. Ja, ik heb hier toch niks te doen. Ik heb hier zelfs was, die ze me gebracht heeft en die ik dan strijk. Elk uur dat ik strijk (voor haar), is een uur (gewonnen) voor haar.
•
(interview 19.3)
For example in this interview fragment a daughter was regulary prying in the wardrobe of her mother, complaining that her mother wore stained blouses. This person clearly indicates that she is able to know when her blouses are dirty, and that she doesn’t need the help of her daughter, on the contrary she helps her daughter with ironing.
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Behoud van waardegevoel • Van waarde zijn om wie je bent: – Gelinkt aan persoonlijke kenmerken: • Wijs zijn, dankbaar zijn, een vechter zijn, een eigen wil/gedacht hebben, niet bij de pakken blijven zitten, …
– Aanvaarding als centraal thema: • Handelen als redelijke, menselijke wezens, en verlies accepteren • Autonomie is nog altijd aanwezig, maar dan op een zeer existentiële wijze • Waarde vinden in het feit dat anderen voor je zorgen
The other form of identity preservation was being valued for who you are, which is related to personal characteristics: being wise, being grateful, being a fighter, having a mind of your own, being able to move on, … Acceptance emerged as a central theme in this concept, referring to acting as a reasonable human being, and accepting what you can not change, hence accepting loss. Autonomy was still present, but in a very existential way, being in control of your thoughts, considerations and acceptance These people were also able to find value in others caring for them
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• X: Ik doe wat ik kan. Ik probeer door te doen. Ik denk dat het beter is zo. Daar gaan in een hoekje en niks doen [dat ben ik nietI do what]. Wat ik kan dat doe ik nog. Maar wat ik niet meer kan, doe ik niet. (interview 7.1)
This is an example of a citation in which being valued for who you are is clearly present
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Behoud van waardegevoel • Doorheen de tijd, met progressie van de ziekte, wordt het van waarde zijn om wie je bent belangrijker • Shift/evolutie in kern waarden van identiteit van prestatiegericht naar existentie gericht • Afhankelijkheid is een belangrijke trigger voor deze shift
In the longitudinal analysis we saw that over time, with progression of illness, being valued for who you are became more important This may indicate a shift or rather an evolution in core values of identity that are performance related towards existential related Dependency emerged as an important trigger for this shift or evolution.
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I would like to illustrate this shift by the case of Terry for whom her car was the vehicle of her autonomy
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Terry: Interview 1 (3,5 maanden na diagnose ) (CDR =0.5) T: Ah, ik ben daar eigenlijk niet triestig van, zogezegd he. Nee. Eenzaam, zo voel ik mij toch nog niet. Als ik nu echt niet buiten huis kon, he. En men zou zeggen: Ge moet den auto afgeven want ge zijt niet meer bekwaam. Ge maakt accidenten of zoiets. Dan zou ik mij misschien al triestiger voelen. Dan zou ik zeggen: "Hey, ze drukken nogal op mij hé" Alé de zoon en de dochter hé. Maar nee. Ik voel mij daar nog sterk genoeg voor, voor het alleen aan te kunnen zal ik zeggen, zonder hulp. En alé dat is toch al, alé dat zit echt in mij, he.
IN the first interview, 3 and a half months after her diagnosis, she tells us that she doesn’t feel sad about having dementia. She is pleased that she can still leave the house and she anticipates that her quality of life would decrease if she had to hand over her car.
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Terry: interview 3 (14 maanden na diagnosis) (CDR=0.5) •T: Ik heb geen rijbewijs meer, omdat ik niet meer mag rijden. Uh, dat was overeengekomen met de dokter, dus. •… •T: En met de auto. Als er iets zou gebeuren, dan ben je gezien. Ze moeten het nakijken, en dan zullen ze zeggen: ‘Ja, maar het is uw schuld’, ook al heb je geen fouten gemaakt. Ze zullen altijd een manier vinden om te zeggen: ‘Jij mocht niet met de auto rijden’. En ook, de auto stond zoveel stil en het kost veel geld. … En het is gek, den ik, omdat mijn dochter zo dicht bij woont.. …. Nee, nee, ik ben heel gelukkig.
By the time of the third interview, 14 months after the diagnosis, she was no longer allowed to drive a car. Although she is still convinced that she is still able to drive the car, she emphasizes her wisdom to accept verdict and her wisdom to see that it is a waste of money if you keep a car you need so little. She clearly shifted her core value of identity, but she keeps on balancing.
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Discussie • Het belang ‘van waarde zijn’ in de beleving • Van waarde zijn/identiteit kan behouden worden door zich aan te passen aan verlies • Het waarde kunnen vinden in het kunnen aanvaarden → behoud van autonomie ondanks afhankelijkheid – Baas zijn over eigen gedachten, overwegingen, en acceptatie
• Het continu balanceren tussen aanvaarding en ontkenning → aanvaarding van dementie is geen vanzelfsprekendheid
The results of this study indicate that: -Being valued is central in the experience of older people living with early-stage dementia -That being valued, and in essence self or identity, can be maintained by adjusting to loss -Finding value in being able to accept loss allows to maintain autonomy, even in view of dependency -The continous balancing between acceptance and denial however suggests that acceptance of dementia is not easy
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Discussie • Persoon met dementie gaat niet passief om met zijn ziekte → agency • Agency: – Controle hebben over jezelf en de wereld – Anderen ∼ erkenning/vrijheid van agency – Zeer kwetsbaar, ook al in het beginstadium van dementie
Throughout the literature on the experience of people living with dementia, it is clear that people with dementia are not passive sufferers, but act as agents Agency is not easy to define, but it refers to being in control of yourself and over the world. One cannot be agent without others. Others are important to recognize the agency and determine in part the freedom of agency. Agency in dementia is very vulnerable, even in the early-stage. The stigma of dementia and cognitive or other problems lead to restricions of agency.
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Discussie • Positief verhaal als een uiting/instrument van agency: – Tegenverhaal
(Lindeman Nelsson, 2001)
• Oproep tot positieve beeldvorming
– Facade • Toenemend rationaliseren van verlies van competentie als een vorm van gezicht redden
– Behoud van identiteit • Creatieve constructie en opvatting van de werkelijkheid, dat als werkelijk ervaren wordt door de persoon met dementie en helpt om verlies te accepteren
– Behoud van hoop • Hoop kan behouden worden door het doel van hoop aan te passen en hoop te herwaarderen (Wolverson et al. , 2010)
– Groeien als mens (Jennings, 2009)
The positive story could be seen as an act of agency and may have different meaning in this act of agency. It may be a counterstory aimed at claiming or reclaiming agency in reaction to a negative imagery of dementia. It may be seen as an increase in tendency to rationalize loss of competencte over time, as a form of face saving. Although this face saving may allow to regain some control, it also means that it is a story the person does not perceive as real. The positive story can also be seen as a means to maintain indentity. It is a creative construction of reality, perceived as real for the person with dementia and helping to accept loss without losing value. It may also refer to a means of maintaining hope. Wolverson-Radbourn et al. studied hope in people with dementia and pose that hope can be maintained by goal adjustment and re-appraisal of hope, quite similar to the shift in being valued we identified. They also pose that hope cannot be maintained if there is no acknowlegdment of the pain of loss - And finally we believe that the positive story is an expression of positive adaptation and of human flourishing. It can be an expression of human evolution instead of devolution as is commonly expected.
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Discussie • Implicaties voor de (verpleegkundige) praktijk: – Waarde-gerichte zorg • Ondersteunen van waarde, agency en hoop
– Luisteren als sleuterinterventie • Kunnen en willen luisteren • Meer luisteren dan naar de woorden alleen • Reflectie op eigen persoon
– Helpen creëren van verhalen
Although our model of a struggle to being valued is in need of further exploration and deepening, it already allows to formulate implications for nursing practice. Instead of a problem oriented care, we should aim for a value-oriented care, looking for ways to support the value, agency, and the provision of hope If the positive story is a key instrument in maintenance of being valued and in maintenance of identity and agency, then listening should be the key instrument in nursing. However this requires nurses who believe that the positive story is a story of value and who are able and willing to spend the time and effort to listen to the story. It requires an enhanced level of listening as we may have to move beyond the literal verbal component of the story to see how, when and possibly why the story is told and to hear the real story. Nurses need to be reflective about their own preconceptions and attitudes and how this may impact on the story of the person with dementia. Dementia may hamper the (cognitive) possibilities to make and share a story and depression or a negative imagery may hamper the belief in a positve story. So we may even have to help create a positive story. In those cases were a negative story prevails, we may have to help and search for equilibrium by counterbalancing with a positive story. A positive story cannot be a true story if we do not acknowlegde the presence of loss and suffering and the struggle to being valued. We will have to look for ways in our daily practice to sustain acceptance of loss without losing value or even with gaining value. For example it may be celebrated that someone still is able to drive a car, but we need to ancitipate together with the person with dementia that a day will come that the disease will make it impossible to drive and search together for others ways of maintaining value. The positive story only has meaning in interaction, and hence we should support the family members We should always balance acknowledgement of loss with emphasize on maintenance, stimulating open awareness with respect for the need for keeping it silent of for denial.
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Discussie • Implicaties voor de (verpleegkundige) praktijk : – Tegenbalans bieden – Zoeken hoe het accepteren van verlies kan ondersteund worden op een manier dat het geen gezichtsverlies betekent, meer nog dat men nog aan waarde kan winnen – Ondersteunen van familieleden
→ Belang van balanceren
Discussie • Shift/evolutie in het van waarde zijn → betekenis voor vroegtijdige zorplanning en euthanasie ?
Conclusie • Belangrijke boodschap voor de maatschappij: – Elke mens bezit waarde in zijn zijn, wat er ook gebeurt – Dementie hebben en competenties verliezen betekent niet dat je ophoudt een mens van waarde te zijn.
To conclude I believe this study has an important message for society: -No matter what, all persons possess important value in their being -Having dementia and losing the ability to be productive does not mean one ceases to exist as a person with value.
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Publicaties • Steeman, E., Dierckx de Casterlé, B., Godderis, J., Grypdonck, M. (2006) Living with early stage dementia: a review of qualitative studies. Journal of Advanced Nursing, 54 (6): 722738. • De Bal, N., Steeman, E., Dierckx de Casterlé, B., Grypdonck, M., Godderis, J. (2004). De beleving van oudere personen met vermoedelijke of lichte dementie. Verpleegkunde, 19: 185195. • Steeman, E., Grypdonck, M., De Bal, N., Godderis, J., Dierckx de Casterlé, B. (2007). Living with dementia from the perspective of older people: is it a positive story ? Aging&Mental Health, 11(2):119-130. • Steeman, E., Tournoy, J., Grypdonck, M., Godderis, J., & Dierckx de Casterlé, B. (2013). Managing identity in earlystage dementia: maintaining a sense of being valued. Ageing and Society, 33 (2): 216-242.
The results of this study have been published in these papers.
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