Dementia Specific Respite Care Concept.

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:

• 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?
• How can the DESKK mobility and counseling program be developed and implemented suitable for the respite care setting?
• What changes occur during the DESKK mobility and counseling intervention related to the PwD and caring relatives?
• 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).

Inclusion criteria

Caring relatives:

• Willingness to take part at the counseling intervention (informed consent)
• Sufficient language skills to understand the counseling sessions
• CR has to be the primary care person for the PwD

People with dementia

• Willingness to take part at the rehabilitation intervention (informed consent [if necessary: signing by the primary care person])
• Capability to understand and follow (training) instructions with support of the involved training assessors (subjective pre-assessment by raters)
• Capability to stand and walk short distances (min. 3 Meter) with support of the involved training assessors
• Minimum amount of 13 days stay in the RC center (planned)

Exclusion criteria

• Other severe cognitive impairments or other severe neurological disease