Figure 1
The PRISMA flow diagram illustrating the database searches, abstracts screened, and full texts retrieved in the scoping review.
Figure 2
Overview of interventions aimed to support communication and collaboration among patients with neurological diseases and cognitive impairments, caregivers, and healthcare staff.
Table 1
Summary of findings on interventions supporting empowerment and assessed outcomes.
| FIRST AUTHOR | INTERVENTION | DESCRIPTION OF INTERVENTION | PARTICIPANTS | EXAMPLES OF ASSESSED OUTCOMES |
|---|---|---|---|---|
| Dröes [1] | DementTalent Dementcoach STAR e-learning | Volunteer work for patients, Telephone coaching and one-line course for caregivers | Patients with Dementia and caregivers | Moderate positive effect on neuropsychiatric symptoms of patients. Caregivers reported less emotional impact and increased happiness compared to those without. No differences in QoL, burden, and competence for patients and caregivers |
| Charlesworth [11] | Carer Supporter Programme [CSP] Remembering Yesterday, Caring Today [RYCT] | Peer-support and reminiscence therapy | Patients with Dementia and caregivers | Improved caregivers’ perceived relationship with patients. No significant improvements in QoL for patients or informal caregivers |
| Laakkonen [5] | Self-management group rehabilitation | Develop self-management skills and self-efficacy. | Patients with Dementia and caregivers [spouses] | Beneficial effects on QoL of spouses and cognitive function of patients. No increase in total costs of care. |
Table 2
Summary of findings on interventions promoting collaborative disease management and assessed outcomes.
| FIRST AUTHOR | INTERVENTION | DESCRIPTION OF INTERVENTION | PARTICIPANTS | EXAMPLES OF ASSESSED OUTCOMES |
|---|---|---|---|---|
| A’Campo [10] | Patient Education Program for Huntington’s disease [PEP-HD] | Education and training-developing coping strategies | Patients with Huntington Disease, caregivers, and healthcare staff | Patients improved in behavioural symptoms, anxiety, coping style, and received more social support. Caregivers experienced reduced psychosocial burden. |
| Judge [9] | Acquiring new skills while enhancing and remaining strengths [ANSWERS] | Educational and cognitive rehabilitation skills training | Caregivers Patients with Dementia | Improved well-being among caregivers. Reduced emotional health strain, relationship strain, and role captivity. Fewer symptoms of anxiety and depression. |
| Mavandadi [6] | Individualized dementia care management [CM] Telehealth Education Program [TEP] | Management education and telephone-based collaborative care program for problem-solving and coping skills training | Patients with Dementia and caregivers | Reductions in caregivers’ negative reactions to behavioural symptoms. Improvements in coping and caregiving mastery. |
| Novelli [2] | Tailored Activity Program—Brazilian version [TAP-BR] | Matching activities to patients’ capabilities and preferences and training for informal caregivers to manage the progression of dementia. | Patients with Dementia and caregivers | Perceived improvement of QoL among caregivers but not patients. Positive impact on caregivers’ distress. No reduction in overall care burden |
Table 3
Summary of findings on interventions enhancing communication and relationships and assessed outcomes.
| FIRST AUTHOUR | INTERVENTION | DESCRIPTION OF INTERVENTION | PARTICIPANTS | EXAMPLES OF ASSESSED OUTCOMES |
|---|---|---|---|---|
| Reblin [12] | Electronic Support Network Assessment Program [eSNAP] | Web-based application helping caregivers visualize their existing social network resources | Informal caregivers caring for patients with brain tumours | No significant effect on perceived helpfulness of social support or differences in care burden. Reduced depression but anxiety levels remained stable. |
| Orosulic-Jeras [3] | Support, Health, Activities, Resources, and Education [SHARE] | Counselling-based care-planning sessions- assessing patients care values and preferences for future care. | Patients with dementia and informal caregivers | Improved decision-making and future care plans through collaborative care planning. |
| Faarup [7] | Family health conversations [FamHC] | Family health conversations promoting partnership and focusing on the family’s unique perspective. | Patients with brain tumours, informal caregivers and healthcare staff. | No significant effect on QoL, family functioning, and family hardiness in patients and their family members, but suggested potential benefits in later stages of the illness trajectory. |
| Kellet [8] | Family Biography Workshops [FBW] | Workshops to support family and staff to co-construct the history of patients in residential care | Caregivers [dementia] and healthcare staff | Enhanced satisfaction and empowerment for informal caregivers. Improved staff’s ability to connect with patients and manage difficult situations. |
| Aasmul [4] | Advanced Care Planning [ACP] | Repeated communication and decision-making- assesses individual preferences and values, and goals, and potential concerns about care | Patients with Dementia, caregivers, and healthcare staff | Improved communication initially, but challenges in sustaining the gains. |