PROTOCOL DEMENTIE - Nivel
DEMENTIA CARE PROGRAMME
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|BOCHOLTZ / SIMPELVELD |
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COORDINATING AGREEMENT FOR PRIMARY CARE BOCHOLTZ / SIMPELVELD
Date of agreement: November 2001
Date of assessment: February 2007
Coordination quality control: Team for the dementia care programme
Eveline Hazelaar, General Practitioner in Bocholtz
Harry Schiffelers, General Practitioner in Simpelveld
TABLE OF CONTENTS
I INTRODUCTION page 3
I.1 Medical Centre Bocholtz page 3
I.2 Coordinating Agreement for Primary Care page 3
I.3 Development of care programmes page 3
I.4 Development of the dementia care programme page 3
I.5 Assisting aids page 4
I.6 Information on this care programme page 4
II OBJECTIVES OF THE DEMENTIA CARE PROGRAMME page 5
III COORDINATING AGREEMENTS page 6
III.1 Patient selection page 6
III.2 Dementia team page 6
III.3 Procedure for the General Practitioner page 6
III.4 Procedure for the district geriatric nurse page 7
III.5 Early-warning procedure page 7
III. 6 Agreements with CIZ page 8
III.7 Registration page 8
III.8 Continuity and synchronization of care page 8
III.9 Aftercare page 8
III.10 Calling in voluntary organizations page 8
III.11 Information given to the patient and informal caregiver page 8
III.12 Privacy page 9
III.13 Lack of or distant informal care page 9
III.14 Incapacity to decide page 9
III.15 Abuse page 9
IV RESULTS OF THE EVALUATIONS page 10
V APPENDICES page 11
VI ADDRESSES AND INFORMATION page 11
VII LIST OF ABBREVIATIONS page 12
I INTRODUCTION
I.1 Medical Centre Bocholtz
The Medical Centre, founded in July 1989, represents a cooperation between general practitioners, district nurses, managers in the care sector and social workers.
I.2 Coordinating Agreement for Primary Care
In 1993, the Medical Centre Bocholtz and the general practitioners (GPs) of Simpelveld combined their activities, resulting in a collaboration which is referred to as ‘’Coordinating Agreement for Primary Care in Bocholtz/Simpelveld”. The teams represented in this collaboration meet twice-monthly and include all GPs of Bocholtz and Simpelveld, representatives from the local homecare and social services providers, as well as the managing director of the Medical Centre Bocholtz.
I.3 Development of care programmes
Because collaboration calls for careful coordination of care, the Medical Centre initiated the development of care programmes as early as possible. After acceptance of the coordinating agreement for primary care, the participants in the collaboration continued these development efforts. This resulted in the launch of various care programmes, including the care programme for dementia.
I.4 Development of the dementia care programme
The prevalence of dementia will continue to increase in the future due to the ageing of the population. In order to meet the expected need for proper care, in 2000 the participants in the coordinating agreement therefore decided to formalize professional and informal care for patients suffering from dementia. A dementia care programme was developed for South-East Limburg in 2001. This programme describes how the professional care and informal care for these patients has been structured.
The working group responsible for this programme consists of Eveline Hazelaar, General Practitioner in Bocholtz; Harry Schiffelers, General Practitioner in Simpelveld; Rafaella Smedts, district nurse specialized in geriatrics (referred to as district geriatric nurse in the remainder of this document); and Maddy Nijdam, managing director of the Medical Centre Bocholtz.
External parties involved in the development of the dementia care programme are the director and the medical advisor of CIZ (the centre responsible for assessing whether patients are entitled to professional care) and the Mondriaan Zorggroep (formerly RIAGG, regional institute for mental welfare). The development progress of the care programme was evaluated in the team meetings on a number of occasions. Several representatives from the disciplines that were not formally part of the working group were consulted for this purpose.
The working group expected to be able to improve the quality of care from the points of view of the patients and informal carers as well as professional carers. The results of these evaluations are described under IV.
The dementia care programme was launched on 29 November 2001. In 2004, a long-term evaluation was started, which was aimed at an in-depth analysis of all elements of the care programme. This evaluation was completed in February 2005.
On the basis of this evaluation, improvements were made to the registration of patients eligible for the care programme (details can be found in the coordinating agreement on page 6). In May 2005 a presentation was held for the team members, which at the same time served as a staff development programme and refresher course for the other team members. This procedure was repeated in 2007. The presentation to the team, followed by the evaluation meeting, took place on 15 March 2007. The main adjustments made to the programme resulting from the 2007 evaluation include a description of the aftercare procedure, and the provision of information regarding dementia and legal protection.
I.5 Memory aids
The procedure for the care programme is summarized on laminated sheets which can be used as memory aids by the caregivers. Alongside this, several appendices have been digitalized and are instantly available. The shorter version of the Dutch College of General Practitioners’ (NHG) Standard for Dementia is available in the GP Information System (HIS), an application enabling the GP and his assistants to consult and manage patients’ medical files in a central server from anywhere.
I.6 Information about this care programme
Information about the dementia care programme can be obtained from the managing director of the Medical Centre Bocholtz:
Mrs. Maddy Nijdam
Kommerstraat 51
6351 ES BOCHOLTZ
The Netherlands
e-mail: m.nijdam@wmcbocholtz.nl
II OBJECTIVES
The objectives of the dementia care programme are as follows:
1. Diagnosing dementia at the earliest possible stage in order to be able to support the patient and informal caregivers adequately and professionally. At the same time, identifying and (where possible) treating cases of secondary dementia.
2. Providing informal caregivers with professional support. Informal carers need to feel that they are heard. Dementia patients experience a great variety of stages over many years; it is therefore essential that informal caregivers benefit from professional support and attention in order to increase their continued commitment.
3. To improve the quality of care for both dementia patients and their informal caregivers.
III. COORDINATING AGREEMENT
III.1 Patient selection
One of the main aims of the dementia care programme is early diagnosis. It is assumed that the GPs and the district geriatric nurse are familiar with the standards for dementia. The NHG standard for dementia describing how dementia is diagnosed was revised in 2004.
All patients initially diagnosed with dementia will be admitted to the care programme. After confirmation of the diagnosis, patients will be classified in the GP’s HIS with the code DE. Existing dementia patients will be admitted into the care programme following an emergency or an interdisciplinary consultation. Thus, the file is gradually extended until all patients with dementia will have been registered in the care programme.
Since 2003 all patients with dementia in Bocholtz/Simpelveld have been registered in the care programme.
III.2 Dementia team
The key team of this care programme is the ‘dementia team’ consisting of the GP and the district geriatric nurse. The dementia team takes over as soon as the diagnosis of dementia is confirmed by the GP. The file of the dementia team is comprised of the GP’s HIS and the report sheets. The report sheets are managed by the district geriatric nurse. She informs the GP of any particulars immediately. A summary of the report sheet is incorporated into the HIS. An essential part of this care programme is the two-way care plan, one for the patient and one for the informal caregiver.
III.3 Procedure for the GP
The GP will make a diagnosis after being alerted to a case of potential dementia by a patient, the people in their immediate environment and/or during a team meeting.
To be able to get an overall impression of the patient’s cognitive functions, the GP can make use of the Mini Mental State Examination (MMSE, see Appendix 5) and/or the Observation List for early symptoms of Dementia (OLD, see Appendix 6). Furthermore, the GP has the opportunity to call in the district geriatric nurse to get a clearer picture of the current problems. The GP uses the NHG Standard for Dementia (see Appendix 4) to make the final diagnosis.
Apart from the recommended standard examination for screening, the examination will be extended with X-thorax on medical grounds if lung carcinoma is suspected.
If necessary, the GP can refer the patient to colleagues from several other disciplines for further diagnostics. Appendix 2 presents a diagram which can be used as a reference for this purpose. The GP is both the care coordinator and the intermediary between primary and secondary medical care.
After dementia has been diagnosed, the GP classifies the patient in the HIS using the code DE for dementia. One month prior to the biannual meeting of the dementia team, the GP’s assistant prints out a list of all patients classified as having dementia. The GP visits the informal caregiver and/or the patient at home or invites them for a consultation to discuss any somatic, social or mental changes. He assigns this task to the geriatric nurse more and more often. If a patient’s situation deteriorates, the GP examines whether this is due to a treatable, somatic cause.
In addition to this, the GP keeps an eye on any difficulties with regard to a patient’s incapacity to decide. This may involve a patient’s financial situation or a patient’s refusal to be institutionalized. The GP points out possible legal measures to the informal carer or activates legal measures himself. More details on legal possibilities can be found in Appendix 11, which is only intended for the caregivers. Caregivers may always consult the social worker participating in the coordination agreement, who is familiar with this matter.
The GP provides the informal caregiver with the brochure entitled Dementie en rechtsbescherming (Dementia and legal protection) published by the Dutch Alzheimer foundation.
III.4 Procedure for the district geriatric nurse
The district geriatric nurse makes house calls to assess the situation, often at the request of the GP. To do so, she may complete an early-warning report form, which is useful to obtain more information about the problems (see appendix 10).
In general, the district geriatric nurse will act on signals from the team meeting. She then further completes the patient’s medical history, sometimes with the help of a list for assessment of the care situation (see Appendix 8). This is followed by the medical diagnosis, after which interventions are set. During the evaluation it may sometimes be necessary to formulate new objectives, thus ensuring a cyclical process. This procedure is referred to as the care or nursing plan.
A similar procedure is initiated for the informal caregiver. The objectives and interventions are usually geared towards information transfer, support and guidance. In order to identify the level of (over)burdening of the information caregiver, the district nurse can make use of the Care Compass (see Appendix 10).
In general, the emphasis in the procedure is on safety and well-being of the dementia patient. The problems recurring most often are mental confusion, disturbed day and night routine, behavioural changes, roaming and wandering behaviour, loss of decorum, risk of injury, social isolation, gaps in ADL, incontinence and constipation. To obtain a clearer view of the degree of decline and the course of the illness, the district nurse can use the Reisberg scale (see Appendix 7).
The district geriatric nurse keeps the report sheet up to date (see Appendix 3), in particular the parts concerning the social and mental situation of the patient and the informal caregiver, while the somatic part of the sheet is completed by the GP during a meeting of the dementia team. The report sheet is designed in such a way that it provides a good overview over time of all aspects relating to the patient and the informal caregiver.
Until 2007, the non-digitalized report sheets were delivered to the GP’s practice by post. The GP checked the report and the GP’s assistant typed out these reports in the GP’s HIS. Since January 2007, the geriatric nurse records the reports in the HIS directly.
III.5 Early-warning procedure
The dementia team comes into action after receiving signals from the patient, the patient’s relatives or the team itself. The early-warning procedure is a permanent item on the agenda of the Coordinating Agreement team’s twice-monthly meetings. Termination of care is also reported in the team, with special attention given to aftercare of the informal caregiver. The department of care from the Meander Thuiszorg home care institution plays a crucial role in terms of both the early-warning procedure and the relationship of trust with the patient. The district geriatric nurse often completes the early-warning report form together with the caregiver (see Appendix 10). The caregiver receives specific training for this purpose by the district nurse at least once a year.
All signals relating to primary care are first reported in the team meetings. Since the implementation of the Wet maatschappelijke ondersteuning (social support act, WMO) in 2007, professional caregivers have been on extra alert to provide adequate care after the first signs of dementia.
III.6 Agreements with CIZ
1. If a house call is needed, a 'comprehensive advisor’ will be consulted to monitor the situation and give recommendations for further action.
2. The Mondriaan Zorggroep may only be called upon after consultation with the GP.
III.7 Registration
The GP records all contacts in his own HIS under dementia. By classifying the patients that have been diagnosed, he can easily generate a list with all patients admitted to the care programme.
Apart from the HIS, a dementia report sheet (see Appendix 3) is kept up to date by the district geriatric nurse. She briefly notes the main points for both the patient and the informal caregiver, thereby making a distinction between somatic, mental and social aspects.
The district nurse manages and keeps the report sheets and makes standard copies of these for the GP. During the evaluation in 2005, it was agreed that a brief summary of the report sheet should be recorded in the HIS by the GP’s assistants. In this way, the HIS provides a more complete picture of the patient and the informal caregiver, thus simplifying the biannual meetings of the dementia team.
Since 1 January, 2007, the district geriatric nurse has recorded information in the HIS directly.
III.8 Continuity and synchronization of care
The continuity of care is described in the circular chain of care (see Appendix 1), which can be described as follows:
The dementia team responds to signals it receives from the patient, the informal caregiver or the team itself. The GP makes a diagnosis (either independently or with help from others) and tries, together with the district geriatric nurse, to create a stable situation for both the patient and informal caregiver. At least twice a year, the dementia team meets to discuss all dementia patients after making a structural, twice-yearly house call or consulting with the informal caregiver shortly beforehand at the request of the GP.
The dementia team may receive signals during a house call, a consult or a team meeting. Alternatively, a stable situation may suddenly change into an unstable situation. In this case, a medical examination must always be considered, either by the GP or others where needed. After further evaluation an adequate intervention can take place, allowing a return to the stable condition. Subsequently, the care chain is being continued.
Since the end of 2005, the district geriatric nurse has taken part in the waiting list consultation of the psychogeriatric department from the Bocholtz Care Centre.
III.9 Aftercare
Practical experience has shown that there is a definite need for support for the informal caregiver, especially after the patient has been institutionalized. The district geriatric nurse therefore continues to provide the informal caregiver with aftercare for four to six weeks after being admitted. If additional aftercare is needed after this six-week period, this will be discussed in the team and referral should be considered.
III.10 Calling in voluntary organizations
In Bocholtz / Simpelveld there is a special voluntary organization Stichting Ruggesteun KLS (Kerkrade/Landgraaf/Simpelveld), which provides support for the informal caregiver. The informal caregiver will be informed about the existence of this organization by the district geriatric nurse at an early stage.
III.11 Information given to patient and informal caregiver
The district geriatric nurse is initially responsible for providing information about the dementia care programme and details on the relevant case. For this purpose, she makes use of the files provided by the home care institution Thuiszorg. She shares part of this information with the patient’s informal caregiver where needed and appropriate. She also requests the patient’s and/or informal caregiver’s permission to discuss any relevant particulars in the team meeting. The GP adds – solely at the request of the patient and/or the informal caregiver – more information to this during the structural house call or consultation.
The Meander Thuiszorg home care institution regularly organizes courses for everybody dealing with dementia patients.
III.12 Privacy
Each discipline complies with the privacy regulations of its own professional group. In the case of agreements involving more departments, the privacy of the client is protected at all times. Joint meetings discussing patients’ cases always require the explicit permission of the relevant patient and informal caregiver.
III.13 Lack of or distant informal care
If no informal care is present or the informal caregiver lives at a distance, professional carers will usually be involved at a later stage. As a result, patients will also continue onto the care programme faster. Although Ruggesteun KLS is basically meant to support the informal caregiver, it can also be called in for patients living on their own.
In principle, nothing changes in the care programme if there is no informal care. If no informal care is available, this needs to be communicated to the CIZ by specifically stating “living alone” or “informal care at a distance” on the fax.
III.14 Incapacity to decide
The GP discusses the patient’s possible future incapacity to decide with the patient and informal caregiver at an early stage. Together they discuss who takes over responsibility when the patient can no longer look after himself. The GP records this in the HIS and on the report sheet (see Appendix 11, only for professional carers).
The GP provides the informal caregiver with the brochure entitled Dementie en rechtsbescherming (Dementia and legal protection) published by the Dutch Alzheimer foundation.
III.15 Abuse
All disciplines are alert to signs of abuse, in particular the medical care department of Meander Thuiszorg.
To report any incident of abuse of the elderly in our region, please contact:
Meldpunt Ouderenmishandeling Zuidelijk Zuid-Limburg
|Name: |Meldpunt Ouderenmishandeling Zuidelijk Zuid-Limburg |
|Postcode and place: |Maastricht |
|Postal address: |Post box 3973 |
|Postcode and place: |6202 NZ Maastricht |
|Phone: |043 3 821 720 |
|Website: |ggdzzl.nl |
IV. RESULTS OF THE EVALUATIONS
During the evaluation of 2004/2005, all appendices have been updated and the care programme has been modified accordingly. The evaluation has led to a number of improvements, which include the following:
- There has been a clear improvement in the way patient information is currently being recorded in the central HIS.
- The care programme has enabled the primary carers to provide a clear picture of dementia patients and their informal caregivers. This fact alone is highly satisfactory.
- The primary health care team has a strong impression that there are fewer last-minute crises. Mondriaan Zorggroep and CIZ were asked whether they could verify the reduced number of problems and last-minute crises in the area of Bocholtz/Simpelveld compared to the Eastern South Limburg area. Although both these institutions did indeed have the same impression, they were not able to verify this with figures.
An evaluation of the dementia care programme took place, as scheduled, in March 2007. As a result of this recent evaluation, the aftercare programme has been described and the information about dementia and legal protection has been outlined for the benefit of professional carers. In addition to this, some minor changes were made to the text of the care programme and addresses were updated. Since 1 January 2007, the district geriatric nurse has recorded her findings in the HIS directly.
The next general evaluation is scheduled for 2009.
V. APPENDICES
Appendix 1: The dementia circle. This circle presents the chain of care, any points of special interest for the GP, the district geriatric nurse, the various consultation possibilities, as well as the standard examination.
Appendix 2: The possibilities for diagnostics and referral
Appendix 3: The report sheet
Appendix 4: A shortened version of the dementia standard of the Dutch College of General Practitioners (NHG)
Appendix 5: Mini Mental State Examination (MMSE)
Appendix 6: Observation List for early symptoms of Dementia (OLD)
Appendix 7: Reisberg scale
Appendix 8: Assessment of a care situation
Appendix 9: Care Compass (‘Zorgkompas’)
Appendix 10: List of signs and symptoms
Appendix 11: Capacity to decide
VI. ADDRESSES AND INFORMATION
Alzheimer Nederland
Postbus 183
3980 CD Bunnik
T + 31 30 659 69 00
F + 31 30 659 69 01
E info@alzheimer-nederland.nl
Department Oostelijk Zuid-Limburg
P. Potterstraat 30
6464 CB KERKRADE
T + 31 45 545 24 53
hwknebel@home.nl
Alzheimer Nederland
Afdeling Heuvelland
Postbus 1134
6201 BC Maastricht
T +31 43 368 54 18 (Tuesday and Thursday 9.00-10.30) or +31 43 407 29 72.
|• Alzheimer Café Parkstad |
|Date and time: Second Tuesday of each month from 19.30 to 21.30 |
|Location: Residence Aambos |
|Address: Aambosveld 4 |
|Postcode and city: 6438 JW Heerlen |
|Phone: + 31 46 442 33 57 |
|Contact person: p.g.willems@planet.nl |
|• Alzheimer Café Gulpen |
|Date and time: third Monday of each month at 19:30 |
|Location: Dr. Ackenshuis (room Goedenraad) |
|Address: Oude Maastrichterweg 21 |
|Postcode and city: Gulpen |
|Phone: + 31 43 368 54 18 |
|Contact person: Elmy Kroeg |
| |
|• Alzheimer Café Maastricht |
|Date and time: second Monday of each month from 19:30 to 22:00 |
|Location: Nursing home Grubbeveld |
|Address: Vijverdalseweg 10 |
|Postcode and city: 6226 NB Maastricht |
|Phone: + 31 43 368 54 18 (Tue. and Thu. from 9:00-10:30) |
VII. LIST OF ABBREVIATIONS
DE Classification code for dementia
HA GP (general practitioner)
HIS Huisartsen Informatie Systeem (General Practitioner Information Sytem)
MMSE Mini Mental State Examination
NHG Nederlands Huisartsen Genootschap (Dutch College for General Practitioners)
CIZ Centrum Indicatiestelling Zorg (the centre responsible for assessing whether patients are entitled to professional care)
For stylistic reasons we have avoided the use of ‘he/she’ and ‘him/his/her’ in this care programme. Where applicable, the term he/him/his indicates either gender.
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