Dementia Specific Respite Care Concept.
Condition: Mobility; Dementia; Counseling; Respite Care
MeSH terms: Dementia
Study type: Interventional

Summary: 
      Objectives:

      Specific mobility programs can delay the functional decline in people with dementia (PwD) and
      help to preserve their abilities of daily living. Respite care is a common used short time
      inpatient service (max. 4 weeks of stay) to support dementia care arrangements. Within the
      DESKK project, a concept is developed which complements and optimizes dementia-specific
      respite care through a mobility program and a counseling program. As one part of the DESKK
      study, it is the aim to develop and implement a time effective and evidence based mobility
      program for PwD in respite care which can be individually adapted on PwD needs and
      preferences. It includes a short "homework-program" for caring relatives to facilitate
      ongoing mobility training of the PwD after returned back home.

      Methods:

      A pilot based, quasi-experimental evaluation study is conducted in a specialized respite care
      facility for PwD. The concept was developed on the basis of a comprehensive literature
      research, study visits at existing counseling programs as well as expert workshops with
      practitioners and scientists. To evaluate the implementation process, qualitative data are
      collected by single und group interviews. Quantitative data are collected using validated
      instruments to assess mobility and cognitive function of PwD. A mixed methods triangulation
      approach will be used to aggregate qualitative and quantitative data.

      Discussion:

      It is expected that the RC concept will be suitable and understandable for the staff, so that
      it can be implemented in the RC facility. As a result of the mobility program, the physical
      abilities of the PwDs should improve. Similar, the burden of the caregivers should be reduced
      by combined effects of the counselling program and the higher mobility level of the PwD. The
      whole DESKK concept, including a systematic counseling program for caring relatives, which is
      not part of this presentation, will be described in form of a practice friendly website to
      get disseminated into clinical routine after its successful evaluation.
    

Detailed description: 
      Around the world, caring relatives play the most important role in care of people with
      dementia (PwD) at home. In 2012 approximately 24.3 million people were affected by dementia
      worldwide and more than 1.5 million people are suffering from dementia in Germany. These
      numbers are expected to rise up significantly within the next 20 years. As a direct
      consequence of dementia-specific care, caring relatives are often heavily burdened. Some
      common symptoms of dementia include progressive and frequent memory loss as well as
      confusion, personality change and apathy. Furthermore, the abilities for walking and standing
      activities get weaker especially because of balance dysfunctions. These symptoms lead to a
      loss of ability to perform everyday tasks for the PwD and an increased risk of falling. Among
      others, this situation can destruct the stability of care arrangement at home and lead to a
      transfer of the PwD to long term care but most PwD have the wish to stay at home if possible.

      Respite care (RC) is a common used short term inpatient service with the primary aim to
      support home care arrangements for PwD and their caring relatives. To reach this aim, caring
      relatives can bring their cared persons to a specialized RC care facility, where they can
      stay about 1 to 8 weeks. During this time, RC facilities could develop and implement
      individual tailored support interventions focused on the concerned PwD and caring relatives
      to reach a stabilization of their caring situation at home.

      However, there are no evaluated or standardized programs for the support of PwD and caring
      relatives in the RC setting till today. In particular, this is a serious problem because
      there is an increasing number of RC residents who suffer from cognitive impairments or
      dementia.

      An individual tailored, specific RC concept for people with dementia and their caring
      relatives could focus on their special needs and help to stabilize the caring situation
      effectively.

      In an actual Cochrane review it was pointed out that there is a high demand for mobility
      based rehabilitation programs for PwD with significant positive effects related to mobility
      based ADL abilities. Mobility based interventions generate the highest effects of all other
      interventions, including medication, related to ADL abilities of PwD and with respect to
      their level of independence in general. However, few standardized and detailed described
      programs for mobility based interventions focused on PwD exist until today. There are no
      structured mobility based rehabilitation programs to support PwD and caring relatives in the
      RC setting. Another Cochrane review pointed out that situation does not only apply for
      Germany but even in international context. With scope to caring relatives, professional
      dementia-specific counseling services have positive effects on the psychological and
      psychosomatic symptoms, coping with stress and managing behavioral disturbances. To date,
      there is no dementia-specific counseling programs specialized to the RC setting, though RC
      facilities have the chance to reach caring relatives, which are often no more accessible for
      other dementia support services, because of their overburdened situation and thereby very
      little time resources. However, especially these caring relatives have a strong need for
      information about dementia and related support services.

      Primary aim of the DESKK Study is the development, test and evaluation of a dementia specific
      RC concept with scope on mobility (PwD) and counseling (caring relatives) referred to its
      usability and implementation requirements. Furthermore an explorative outcome evaluation will
      be performed to describe intervention processes of this dementia specific concept focused on
      RC staff, PwD and caring relatives. To reach these study aims, following research questions
      are intended to be answered:

        1. What kind of intervention parts and RC structures/processes are relevant for the
           development of a dementia specific RC concept focused on an ADL based mobility program
           for PwD and a counseling program for caring relatives?

        2. How can the DESKK mobility and counseling program be developed and implemented suitable
           for the respite care setting?

        3. What changes occur during the DESKK mobility and counseling intervention related to the
           PwD and caring relatives?

        4. How is the DESKK concept subjective rated by the caring relatives and what changes
           related to burden (CR) and mobility (PwD) occurred after ending the RC stay (Follow-Up).
    

Intervention name(s): Dementia related mobility and counseling
Intervention type(s): Other
Intervention description(s): The DESKK mobility program is based on the already existing day structure of the RC facility with two slots a day for physical activation activities (1 ½ hours forenoon and 1 ½ hours afternoon). The program structures these activities based on specific developed exercises, which are focused on the individual mobility level of every PwD and his/her mobility level.
The DESKK counseling program is an effort to structure and systemize counseling processes focused on the respite care setting by different documents and assessments.
Intervention model: Single Group Assignment
Masking: None (Open Label)
Primary purpose: Supportive Care