Integrated dementia care in the Netherlands

M. M. Mahler, MSc, Senior Program Officer Dementia

The National Dementia Programme, 2005-2008

Initiative:• Ministry of Health • Budget: ca. 2.5 million euro

Aim:• To improve community dementia care, making it

more integrated • Enhance the position of national advocacy

organisation of Alzheimer patients

Programme implementation by:

• Vilans (knowledge of care area)• CBO (experience with improvement)• Alzheimer Association Netherlands (advocacy)• Co-operation in central working group for drafting

and carrying out programme

• The programme implies stimulating and supporting regions to improve their dementia care

Organisation

• Regional working groups; max. 63 in 5 waves

• Including organisations most important for community dementia care

• Including Alzheimer representatives• Central working group is steering,

stimulating and supporting• National website, meetings, gimmicks, PR

Approach

• Regions select most urgent dementia care problems from list of 14

• Innovative approach: listed according to the patients and their caretakers needs

• Regions set up and carry out 3 or 4 projects to address the selected problems

National Dementia Top 5 problemareas

1. Patients ‘afraid, angry, confused’

2. Partner: Its getting too much for me

3. Resistance against admission

4. Feelings of ‘something is going on: but what is it, and what can help?’

5. Miscommunication with care professionals

Projects

Case-management; dementia consultant 52 Information, call hours , brochures, websites 49Early detection, diagnosis 26Support for family carers, respite care 26Education for professionals 25Various 28

Total number of improvement projects 206

Results

• 57 regions active • 206 projects carried out• Alzheimer Association enhanced• Sustainable better care in regions• “Dementia centers” introduced• Case management introduced

Spin off after closure of the programme• Regional project leaders associated within a

national network on dementia care (2009)• It still exists and Vilans organizes four meetings /

symposia every year to provide information, contacts and to share knowledge

Programme of integrated dementia care• The Ministry of Health (VWS) initiated a new

programme: National programme of integrated dementia care in which a new way of regional funding of community dementia care (including case management) is carried out(2009-2011)

• Vilans has started a website with information on dementia care

The National Care Standard

After some delay, we started in January 2011 with a kick-off meeting.

Shortly after, the first working groups were held in which the outline for the National Care Standard was put together

Based on different levels of evidence: Guidelines, research outcomes, expert-opinion and practice based. In total we used over 250 publications, guidelines and chapters from (study) books to compose a state-of-the-art standard

• It is the very first Care Standard that covers cure, care & welfare• The development took 1,5 year• We had 4 working groups with professionals, people of the

advocacy organisation and representatives of professional organisations.

• Per fase of dementia 1 working group (before diagnosis, diagnoses + start treatment and delivering care en services)

• 1 working group covered the overall organisation of integrated community dementia care

• The first concept was presented in septembre• We conducted feedback rounds with 3 groups:- Carers of people with dementia- Experts in the dementia field- 10 dementia networks• Some unsolved issues were discussed with a small group of

scientists and experts

• After the feedback process, we composed the definite version

• Vilans, Alzheimer Association together with 29 professional organizations developed the first National Care Standard for Dementia Care

• The Care Standard has been launched successfully on the 31st of May

• It has to be authorized by all professional organizations this year

• Vilans, Alzheimer Association and networks dementia will start implementing the care standard in 2013.

Community Zorgstandaard Dementie:

VPG

The National Care Standard contains the most important chapters:

• Prevention and early signals• Diagnosis • Casemanagement• Treatment, guidance and support• Delivering care and other services• Organisation of dementia care• The last chapter contains the indicators

The Care Standard describes the optimal care for people with dementia and their informal caregivers.

The whole continuum of the disease, starting with early signals

Important points made in de care standard are:•Care is delivered at home or as close to home as possible•The needs of people with dementia are leading in providing care

•The process is described as stepped care•Casemanagement is an important part of dementia care•Support starts with enhancing self management and supporting the informal caregivers and the patients networks•Good care also consists of a good integral care plan•The organisation model is that of a tangle model

• Vilans measured the quality of dementia networks (process, structure and outcome) for the last three years

• This year, we adapted the indicators to meet the National Care Standard

• 56 of the 87 networks completed the survey• We analyzed the data to provide a report to each network in

the meeting on the 14th of June• A broader analyses will be made this summer to compare

the networks on a national level

• Within Up to Care! we support more than 10 dementia networks to improve on sustainability and readiness for the future

• Several networks have found a new business model to provide care for all the inhabitant in their region

• The main focus is on supporting the organizational components, rather than creating more products

Conclusion and discussion

• A lot of work on integrated care has been established• Still, there is room for improvement

Issues• How to provide care to the growing number of people with

dementia with less professionals and shrinking budgets?• How to ensure different organizations to work together on

providing good care for people with dementia, regardless of the place they live?