1 IMPLEMENTATIE PAL4 DEMENTIE BIJ CLIENTEN VAN ZORGORGANISATIE BEWEGING 3.0 ONDERZOEK NAAR IN HOEVERRE PAL4 ONDERSTEUNING KAN BIEDEN AAN DE ONVERVULDE BEHOEFTEN VAN MENSEN MET DEMENTIE EN HUN MANTELZORGERS SUMMARY 1.Introduction Dementia is probably an epidemic disease in a few years. Dementia is an umbrella term for clinical pictures that correspondent with memory problems, disorders of the memory and behavior change 1. Alzheimer is in 70 percent of the new cases of dementia the cause, in 15 percent of the cases vascular dementia is the cause and in 15 percent of the cases other diseases are underlying dementia 2. In 2010, people in the Netherlands have dementia people with dementia are younger than 65 year. Above 65 year, 10 percent of the total population has dementia, above 80 year this number is raisin to 20 percent and above 90 year, more than 40 percent of the total population has dementia. In the next years, the total number of people with dementia will raisin till in This is caused by the proportional increase of ageing, a new development caused by higher life expectancy and the diminishing population growth. To provide enough and professional care to all the people with dementia in the future and control the health costs, measures should be taken. The increasing amount of people with dementia has also an increasing need to have a suitable accommodation or nursing home. If people with dementia will live longer independently at home, the demand to nursing home will decline 3. Caregiver In the first phase of dementia, the caregiver plays an important role. If people with dementia stay at home in the second phase of dementia, the caregiver gets an even more important role. Caregivers provide care to people with dementia because they have a personal relationship with the patient. Most of the time, the caregiver is a spouse, the son (in law) or the daughter (in law). The caregiver is 24 hours a day available. This lays a heavy burden on the caregiver. Every caregiver experience burden in a different way. The Zarit Burden Scale (ZBS) is an instrument to measure the burden of the caregiver caused by the dementia of the patient. Support To support the caregiver and the patient, it is important to determine their needs. The five most called unmet needs of the caregivers and patients at home are: memory, daily activities, social contacts, safety and information. EHealth (Domotica) is a possible solution to the consequences of ageing, and people with dementia may be able to live longer independently at home. It is a possibility that it can support their unmet needs. Monitoring or remote care are examples of Domotica. 1 RIVM. Nationaal kompas volksgezondheid. Dementie. [webpage] 2009 [received on ]; Available via 2 Gezondheidsplein . Dossiers. Mogelijke oorzaken van dementie. [webpage]. [received on ]. Available via 3 Alzheimer Nederland. Wat is dementie?. [webpage] 2010 [received on ]; Available via
2 At this moment, multiple projects take place in the Netherlands whereby Domotica is introduced. Focus Cura is a company that focuses on the opportunities of Domotica. Their goal is: people supported by technology and innovation can live longer independently at home. They offer monitoring, sensor technology, key safes and remote care. PAL4 (Personal Assistant for Life) is an example of remote care that is developed by Focus Cura. PAL4 is a possible solution to support people with dementia and their caregivers. PAL4 PAL4 is a system to support the daily activities of a client whereby a client possible can stay longer independently at home. The system has multiple functions: filling and view of a life album with photos, a diary, games, a diary, video contact with professionals and other participants of PAL4. PAL4 has a touch screen to serve the system. A more simple version of PAL4 is developed for clients with dementia. PAL4 is a possible support for the unmet needs of people with dementia and their caregivers. Older people with memory problems is a client group of Beweging 3.0, a care company in the region of Eemland. Organization Beweging 3.0 has multiple successful PAL4 projects with older people 4. Research questions The purpose of this research was to identify the technology factors to be successful to support people with dementia and their caregivers. Is PAL4 a possible technology to meet this goal. In this research are, through different research methods, answers generated on the main question and sub questions. Main question: To what extent can PAL4 offer support to the unmet needs of people with dementia and their caregivers? Sub questions: The first three sub questions give insight into the unmet needs of people with dementia and their caregivers, the effect on the caregivers and the need of support. 1. Which unmet needs have people with dementia and their caregivers? 2. What is the effect of the unmet needs on the caregiver? 3. Which support receive caregivers currently and which support would caregivers like to have? The answers to the last sub question bellow will give insight in the actual support PAL4 to the unmet needs and the effects for the caregivers. 4. How is PAL4 supportive for the unmet needs? a. To what extent is PAL4 user friendly to offer support to the unmet needs. 2. Theoretic framework Factors that determine the moment of institutionalizing for people with dementia. Institutionalizing of people with dementia depends on the caregiver. For a caregiver with a heavy burden caused by the dementia, it can be hard to take care for the patient. A son or daughter is more likely to institutionalize the patient than a spouse caregiver. In an ideal situation, the caregiver has less burden, achieved through suitable support caregivers used an integrated telephone system to have contact with other caregivers and family. The researchers concluded that contact with family, living far away, and the exchange of information with other caregivers were very important. Caregivers can be isolated caused by the care for someone with dementia. Contact with peers is very important 6. 4 Alzheimer Nederland 2. Feiten en cijfers over dementie. [webpage] 2010 [received on ]; Available via 5 Thomas et al.  Reasons of informal caregivers for institutionalizing dementia patients previously living at home: The Pixel study. [International journal of geriatric psychiatry, 2004; 19: ]. 6 Czaja, S.J. & Rubert, M.P. (2002) Telecommunications technology as an aid to family caregivers of persons with dementia. [Psychosomatic Medicine 64: ].
3 There are different types of technology: ambient technology, technology served by people with dementia and technology served by caregivers. Sensor technology is an example of ambient technology 7. Fve phases for a successful implementation of a information and communication technology are: 1. Organisation needs and goals 2. Organisation needs meet ICT solutions 3. Behaviour and environment 4. Education and organisation. 5. System use inducing strategies. Evaluation of the different phases is very important. The implementation of PAL4 can be successful if the different phases are followed 8. PAL4 is a possible ICT solution for the five unmet needs, every part of PAL4 have the potential to support one of more unmet needs (table 1). Table 1. Support of PAL4 parts linked to the unmet needs. Unmet needs PAL4 parts Memory Daily activities Social Safety contacts Videocontact care and family Information PAL4 TV My agenda Life album Diary PAL4 - neighborhood - health and care - shopping and leisure - family and contact 2.1 Instruments to elaborate the unmet needs To determine if clients and caregivers experience the unmet needs, different instruments are used to examine situations: memory, social contacts, daily activities, safety and information Table 2 summarize the different unmet needs linked to the different instruments and their subjects. Table 2. Instruments and subjects linked to the unmet needs Memory(MMSE) Social contacts Daily activities Safety Information (BPSD/MMSE) (ADL/IADL) (BPSD) Forget activities Difficulties to keep in touch with family Household activities Wander Lack of information Forget appointments Difficulties with social Personal care Physical agression Incomplete or vague contacts information Forget medicine Finance Shouting Forget keys, mobile Meals Fear phone Orientation problems Taking medicine Forget keys, mobile phone 7 Nijhof et al.  Dementie en technologie. Een studie naar de toepassingen van techniek in de zorg voor mensen met dementie en hun mantelzorgers Tijdschrift voor Gerontologie en Geriatrie, 40, Kukafka et al. . Grounding a new information technology implementation framework in behavioral science: a systematic analysis of the literature on IT use. [Journal of Biomedical informatics 36 (2003) ].
4 2.2 The influence of unmet needs to caregivers The subjects of the various instruments describe the areas where people with dementia may have problems. The Stress Process Model (SPM) indicates the influence of different stressors on someone, in this case the caregiver. A stressor is a cause for stress. For each situation and individual are different combinations of factors that influence their actions. For caregivers can also be determined which factors lead to stress and problems. Figure 3 shows the Stress Process Model 9. This research focused on the primary and secondary stressors. There are four areas of stress Figure 3. Stress Process Model caused by the primary care provider: - Physical stressors - Psychological development disorders and stressors - Socio-cultural stressors - Spiritual stressors The five unmet needs of people with dementia and their caregivers possible cause stress on the physical, psychological, social, cultural and spiritual areas of caregivers. The four areas that define the cause of stress to determine the primary and secondary stressors, influenced by the social and economic status, environmental factors and the moderating resources leads to mental health items. 2.3 Theoretic research model Figure 4 gives a summary of the literature used. People with dementia and their caregivers mentioned five most common unmet needs by dementia (COGKNOW): memory, social contacts, daily activities, feelings of safety and information. Any person with dementia and their caregivers experience dementia differently. The five unmet needs may affect different areas at the caregiver (SPM): physical, psychological, social / cultural and spiritual. Caregivers and clients may need support. This support could be completed by PAL4 or another type of support. Figure 4. Theoretic framework 3. Methods Maximum 20 clients with dementia (mild) and their caregivers were able to participate in the research, they all received a PAL4 system. Research methods and instruments Table 5 shows an overview of the used research methods and instruments for each sub question. 9 Pearlin, L.I. . The Stress Process Revisited Reflections on Concepts and Their Interrelationships Handbook of the Sociology of Mental Health, Kluwer Academic/Plenum Publishers, New York.
5 Table 5 Used research methods and instruments for each sub question. Sub questions Needs Assessment Usability Usage Support 1.Which unmet needs have Survey people with dementia and their Baseline caregivers? MMSE 2. What is the effect of the unmet needs on the caregiver? 3.Which support receive caregivers currently and which support would caregivers like to have? 4.How is PAL4 supportive for the unmet needs? 4aTo what extent is PAL4 user friendly to offer support to the unmet needs. ZBS Baseline Baseline Evaluation Baseline Evaluation The total research lasted five months, the time between the baseline and the evaluation was short. Analysis framework The different instruments have been analyzed. For the analysis of the survey, MMSE and ZBS, SPSS 17.0 is used. For the analysis of the s and video contact, Excel 2007 is used. 4.Results Characteristics of the clients with dementia and their caregivers: - Two male and six female clients with dementia. - Six spouse caregivers (internal caregivers), and a son as caregiver, and a daughter as caregiver (external caregivers). - Two clients are suffering ½ - 1 years from dementia, one client suffering from dementia 1-2 years, two other clients suffering from dementia 3-4 years, another client is suffering from dementia 4-5 years and the last two clients are suffering for more than 5 years from dementia - All caregivers provide care to the client during the whole period of dementia. - All clients have daycare, four clients have household support, three clients have a case manager, one client has personal care and medical treatment. There is a large variation in age within the caregiver group, this is less true in the client group. There is also a difference in MMSE (Minimal Mental State Examination) between the clients. A client has no dementia according to the test, four clients have mild dementia and three clients have moderate dementia. According to the ZBS, one caregiver has little burden, five caregivers have mild-moderate burden and twee caregivers have moderate-severe burden. The clients have been installed at different moments because of the time to request to install internet and the sign up of clients through case managers. - The survey and the baseline reveals that the unmet needs: memory, social contact, and daily activities, are experienced by all the caregivers. The MMSE does not explain the differences that exist. - The survey and the baseline reveals that the unmet need: safety is experienced again by all caregivers, but less than the previous three unmet needs. The MMSE does not explain the differences that exist. - The survey and the baseline reveals that the caregivers do not perceive the unmet need information. The MMSE does not explain the differences that exist. - The changes are mainly at the physical, psychological and socio-cultural area and less on spiritual. Each caregiver reacts differently. This is also explained by the Stress Process Model, where in addition to the stressors, coping and the environment are important factors. It is difficult for caregivers to indicate what support they want. Agencies providing services is a frequently mentioned support. Logfiles Video contact Baseline Evaluation Baseline Evaluation Logfiles Baseline Evaluation
6 - PAL4 cannot support all unmet needs. In a few situations caregivers mentioned that PAL4 is able to support, like shopping or to fill the agenda. Other caregivers do not think that the agenda support them. - Caregivers have different experiences with the use of PAL4. This seems to be related to the type of interference, place of PAL4 in the house and whether the caregiver has a computer of his own. Clients of external caregivers mainly use the calendar, while other clients use more the shopping and entertainment part. 5.Conclusion Based on all the collected results, there can be concluded that PAL4 partly can support the unmet needs of people with dementia and their caregivers. PAL4 has sufficient possibilities to support clients and caregivers. However, the caregivers must want the support and they have to be motivated to work with PAL4. Caregivers provide care for the client as long as they are able to. Therefore they indicate they do not need all the possible support. Looking back on the theoretical model in figure 4, this model is unique for every client and caregiver. Not one situation is comparable with another situation. Many factors play a role to determine the unmet needs and the changes of the caregiver. Because of this, every client and caregiver will use PAL4 in a different way. In table 2, the expectations of the support that PAL4 can offer to provide the unmet needs were shown, based on their functionality: - The expectation was that video contact could provide support for memory, social contacts and safety. Video contact was only possible with organization Beweging 3.0 and the service desk. So the video contact did not fulfill all the expectations. PAL4 TV support daily activities, social contacts and information. - The agenda was expected to provide support for memory, daily activities and safety If the agenda works well, the agenda would certainly be able to support unmet needs. - Life album was expected to support the memory. The life album is hardly filled in. However in the future it will used more, but it is not considered as a high priority. - The diary would be a support for memory and daily activities. Only a few caregivers have completed the diary. So, the diary does not seem to support very much for those unfulfilled needs - The last part of PAL4: shopping and entertainment is the most used part. Also health and health care, neighborhood and family and contacts were parts of the PAL4 button. Family and contacts do not support the unmet needs. The health care component contains information that is found to be too confrontational and more information about the capabilities of services have to offer real support. Neighborhood and living does provide information about the neighborhood but caregivers indicate that they already read this information in district newspapers. The shopping and entertainment part gives the most support for caregivers Answer to the main question Not all expectations came true. The PAL4 system is a support for the unmet needs, but further development of the system and the proper guidance while using the system will enhance the support for the unmet needs. There is still plenty of room for improvement. 6.Discussion With the implementation of ehealth, like PAL4, many factors are involved. Kukafka et al  describe the steps for a successful implementation of healthcare technology. The five steps were not that well performed during the implementation process of PAL4. Phase 1 organizational needs and goals: Beweging 3.0 would like to have the knowledge and expertise regarding remote work to develop care arrangements for people with moderate dementia and their caregivers. They also would like to give the clients and caregivers support. Phase 2 Organization needs in line with the ICT solutions: The development of care arrangements has not yet been addressed in this project. Wherever possible the organization Beweging 3.0 has tried to have image contact with the client and the caregiver, but to provide care is not yet implemented. Phase 3 and 4 Behaviour and environment and education and organisation: In phase three and four, the factors which affect the behavior to use the system are: Before implementing the PAL4 system, a few factors are important:
7 - The target group, clients who receive daycare, are not the best target group. - Give motivating presentations and home visits to clients and their caregivers about the PAL4 system; - Caregivers must be well informed about the affairs concerning the connection; - Make it possible to have video contact with family. - Give an advice about the place of the PAL4 system in the house. The best place to have PAL4 in house is the living room. - The client must receive, as soon as possible, good and multiple explanations. Factors that enable the system use of PAL4: - 24 hours a day video contact with the organization. - A separate keyboard. The keyboard on the screen is difficult to operate. - Develop a tool to use the touchscreen. - Develop a PAL4 system with less buttons for clients with dementia. - Minimize interruptions. Reinforcing factors: - The caregiver must be very excited about the PAL4 system. - Professionals should be involved during the project, so that they are more motivated to support the use. - Clients and caregivers can earn points by participating in contests and bingo. These points can be redeemed for gifts. This encourages the use of these parts. Phase 5 System use inducing strategies. Currently there are protocols to implement PAL4 but with the experiences of this research, the protocols must be upgraded. In this way, the implementation of the system PAL4 will be more successful. Some research issues: - a few clients have participated in the research. - a client probably think that the PAL4 system is successful, when it meets some needs, but the organization has also money issues. - Season may matter while using the PAL4 system. - the evaluation time was very short - the organization should be more involved in the project - the logfiles contains little information. - more structured s 7.Recommendations More research should be conducted to the use of the PAL4 system by clients with dementia. The research should include both internal and external caregivers. The follow-up study would be optimized if the PAL4 system has new features, functions should be added or linked to other systems: - information for caregivers, about the case managers, buddy projects etc. - Upload a social map - Online shopping - Connect to a GPS or sensor system Finally, the healthcare organization must be aware that the measures they take to participate in a project of PAL4, help determine whether a project is successful or not. Professionals from the healthcare organization must be involved.
8 SAMENVATTING Dit onderzoek beschrijft de onvervulde behoeften van licht dementerende cliënten van zorgorganisatie Beweging 3.0 en hun mantelzorgers: geheugen, sociale contacten, dagelijkse activiteiten, gevoel van veiligheid en informatievoorziening. De onvervulde behoeften zorgen ervoor dat op fysiek, psychologisch, sociaal-cultureel en op spiritueel gebied veranderingen plaatsvinden bij de mantelzorgers. PAL4, een Persoonlijke Assistent voor het Leven, is een mogelijke ondersteuning bij de onvervulde behoeften en veranderende gebieden van de mantelzorgers. Dit onderzoek gaat verder in op de mate dat onvervulde behoeften en veranderingen bij de mantelzorger worden ervaren, daarbij werd gekeken naar in hoeverre het PAL4 systeem ondersteuning kan bieden. De mate van dementie bij de cliënten is met behulp van het Mini Mental Statement Examination instrument bepaald. Enquêtes, de Zarit Burden Scale en s zijn met acht mantelzorgers afgenomen. Dit resulteerde in een overzicht met hierin: de mate van onvervulde behoeften die zij ervaren, de belasting die zij hierdoor ervaren en beleven, de ondersteuning die de mantelzorgers al hebben en de verwachte ondersteuning die PAL4 zou kunnen bieden. Deze resultaten werden vervolgens gebruikt als basis voor de evaluatie s. Deze s werden afgenomen nadat cliënten en mantelzorgers enige tijd gebruik hadden gemaakt van het PAL4 systeem. Dit resulteerde uiteindelijk in een overzicht met hierin: de veranderingen van de onvervulde behoeften door het gebruik van het PAL4 systeem, de ondersteuning die het PAL4 systeem had kunnen bieden en de gebruiksvriendelijkheid van het PAL4 systeem. Met behulp van logfiles en beeldcontact analyse werd het gebruik verder geëvalueerd. De resultaten tonen aan dat het PAL4 systeem in beperkte mate een ondersteuning voor de onvervulde behoeften is, maar doorontwikkeling van het systeem en de juiste begeleiding bij het gebruik van het PAL4 systeem zullen de ondersteuning voor de onvervulde behoeften van cliënten en hun mantelzorgers kunnen vergroten. Er is nog genoeg ruimte voor verbetering. Voor een succesvolle implementatie van PAL4 zal de zorgorganisatie, vanaf het begin, professionals moeten betrekken. Snelle reactietijd op vragen en problemen is hierbij een belangrijke factor. Tevens moet de organisatie zich realiseren wat de juiste doelgroep is voor het gebruik van PAL4. Verbetering van het systeem en functionele uitbreidingen van het PAL4 systeem zijn noodzakelijk voor een betere ondersteuning aan cliënten met dementie en hun mantelzorgers. Verder onderzoek zou zich moeten richten op een grotere onderzoeksgroep met een vernieuwd PAL4 systeem, gebaseerd op de bevindingen van dit onderzoek.