In a study published in the International Journal of Environmental Health and Research, researchers at Bangor University in Wales and University College London adapted a digital training resource for dementia care partners to reflect the specific needs and preferences of carers of persons with rare dementias such as FTD.

The iSupport for Dementia program was initially developed by the World Health Organization (WHO) as a free online resource to help prepare dementia care partners for the challenges they might face. iSupport is a self-help tool and provides information about dementias, guidance on relaxation strategies, and advice for providing care. The program, however, was initially developed with more prevalent dementias like Alzheimer’s disease in mind.

As the study notes, less common dementias present with different symptoms than their more well-known counterparts. In addition to having considerably different symptoms from Alzheimer’s disease, FTD typically strikes younger which leads many to believe it to be the most common dementia in people under 60.

The study’s authors set out to refine iSupport and better meet the needs of people affected by FTD and other rare dementias, entering into a license agreement with the WHO that requires the organization’s approval before any adaptions are implemented. The agreement also provided aguide that outlined specific steps to make adaptions, which required that any changes be generated by focus groups of care partners and healthcare professionals (HCPs). Per the guide, the two groups should review iSupport on their own, noting any modifications that come to mind.

The team recruited six care partners and nine HCPs, and asked them to identify the five most essential adaptations they believe could make iSupport relevant for care partners of those with FTD and other rare dementias. Their recommendations generally fell within three recurring categories:

• Presentation
  • Participants found some elements of iSupport to be patronizing, such as messages at the end of a lesson congratulating users for completing it. Some language used was outdated and not person-centered.
  • The images in iSupport were also found to be inappropriate, with participants noting that the cartoon-themed drawings needed to be replaced with more “age-appropriate” ones.
  • Too much information was presented at once, which care partners said poses an issue when pressed for time, as they often are.
• Content
  • Participants stressed the importance of including information about the symptoms of rare dementias, like FTD.
  • In addition to recommending practical care advice for the different rare dementias and their symptoms, participants suggested that iSupport include legal advice on relevant topics.
  • Participants also noted how crucial it was to emphasize self-care and to provide guidance on seeking support. Guidance on normalizing the journey’s emotions and finding activities one enjoys were highlighted as essential.
• Context
  • While iSupport content implies that all tips will work, care partners noted this is untrue. The dementia experience is different for everyone; not all advice will apply to every case.
  • Participants further emphasized the need for a person-centered approach to care. The relationship between each care partner and person diagnosed differs, and their situations are unique, which iSupport needs to recognize.

In reviewing participants’ suggestions, the authors noted which adaptations were the most recommended and which were practical to implement. Suggestions not in line with the principles behind iSupport were not considered. The authors made several changes throughout iSupport:

• Presentation Adaptations
  • The language was altered to remove elements that participants found patronizing, and outdated terms were removed. In some places, it was clarified that some terms still used by care partners (such as Pick’s disease) are no longer used.
  • An illustrator created new graphics that were less stylized, more age-appropriate, and representative of different ages, genders, and ethnicities.
  • While the PDF version of iSupport retained its overwhelming size, the online version was noted to be much easier to navigate, allowing users to jump to sections relevant to them.
• Content Adaptations
  • The research team adjusted numerous elements of iSupport to represent better less common dementias, such as adding information on visual changes, difficulty with movement, and apathy. To avoid adding to the already dense content, the team implemented a recommendation to include links to information and resources available elsewhere.
  • Practical care advice was added to iSupport, which included an emphasis on adapting care as neurodegeneration progresses and expanded information about powers of attorney and wills.
  • Links to websites offering counseling for people diagnosed with rare dementias and care partners were added, keeping with the recommendation to “signpost” necessary resources to avoid bloating the content further.
• Context Adaptations
  • The “check your understanding” sections that previously presented tips that “will” work and “negative” responses to situations were altered to offer a variety of solutions to a given situation instead. The changes emphasize that not every solution will work for everyone without risking further stressing care partners already worried about doing something wrong.
  • Emphasis was placed on respect towards the preferences of the person with dementia before diagnosis, such as helping maintain hobbies or their desired fashion style. Researchers also took care to represent better the diversity of families affected by rare dementias like FTD, such as using diverse names in example cases and including same-sex couples.

Six participants took part in a survey reviewing the adaptations, with three strongly agreeing that there was improvement in all areas, two agreeing, and the last neither agreeing nor disagreeing. One participant discussed further adaptations that could be made, such as applying for a handicapped parking permit, which the team later added.

The researchers concluded their study by noting that the iSupport rare dementias adaptation is currently undergoing a pilot to assess its acceptability by people affected by rare dementias like FTD. If it meets the criteria of researchers and the WHO, iSupport will be available online for free through the Bangor University and WHO websites.

Are you interested in participating in research like the iSupport study? The FTD Disorders Registry lets you share your experiences to guide researchers studying FTD and will notify you about opportunities to participate in research.