Today’s blog is by Ruth, an Occupational Therapist in NHS Forthvalley @RuthOTDem
It became apparent to me over the past few years while leading a Post Diagnostic Carers Group for people living with dementia that fronto temporal dementia (FTD) Carers didn’t “fit” within our current service provision. At this time, carer support groups available in the Falkirk area were set up specifically for carers of someone with Alzheimer’s disease and vascular dementia, whose primary early symptom was memory changes. However, people with early onset dementias have very different needs. Early symptoms can include changes in behaviour, speech or mobility. Many cares living with someone with fronto temporal dementia felt isolated as other carers’ personal situations were very different from their own.
Occupational Therapy, nursing and the local Carers Centre training and development coordinator worked together to set up a local fronto temporal dementia Carer support group which meets monthly for 2 hours. The group aims were to
- provide information advice and support to carers
- provide a forum to learn more about the conditions
- discuss share ideas and information of how to deal with their specific problems
- provide forum to develop mutual support
- signpost to other services that might be helpful
We meet at our local carers centre in Falkirk as it is central with good transport links. We also wanted to get away from a clinical type setting. We have covered a range of topics including
- The emotional impact of caring and carer wellbeing
- What is Fronto Temporal Dementia and what is the possible impact and progression?
- Advice for carer who is coping with behavioural issues. g. Apathy, agitation, Disinhibition, aggression, poor safety awareness
- Managing dietary changes
- Planning for the future
- Communication tips and advice
- Money and benefit advice
- What support services are available in my local community
To establish if this carers group had made a difference to them and what was important, we asked a number of questions and this is what we found:
- When asked if the group had benefited the carers health and welling 25% agreed and 75% strongly agreed
- 25% agreed that the sessions had made them feel more confident and 75% strongly agreed to feeling more confident
- When asked had the sessions allowed the carer time to enjoy some time out with their caring role 25% agreed and 75% strongly agreed
- When asked about having time to have their say 25% agreed and 75% strongly agreed
- 25% strongly agreed and 75% agreed that the sessions helped them feel more positive about their relationship with the person they care for and other family members
We also were able to capture comments from evaluations
- Good to have the chance to her how others cope and to identify symptoms.
- It is also good that the sessions can be flexible to suit the mood of the carers
- Helps the carer understand the different stages carers go through when caring for someone with dementia and how different it can be for everyone
- Given time to express your concerns and made to feel not alone
- Sharing experiences was invaluable
- Gained knowledge of fronto temporal dementia
As group leader’s we felt that this group has given carers of people with fronto temporal dementia a forum to express some painful and difficult emotions. They have all shared their personal journey to diagnosis, they have talked about their day to day difficulties and frustrations trying to get the right support.
The group has been sensitive to each other’s individual needs and we believe carers found this a safe place to talk. The carers were also open about the impact of dementia on their own health as well as their families and how it has affected their daily routines and social life.
We hope that by bringing the carers together we have made a positive impact on their own health and wellbeing. We were delighted the carers group evaluated well and are currently opening the group to all fronto temporal dementia carers in Forth Valley with the aim to connect with other fronto temporal dementia Carers Support Groups in the UK
Hopefully you were at the Alzheimer Scotland conference on the 3rd June where I was sharing this work during a ten minute “soap box” session, sharing our partnership approach to supporting families and the importance of considering their health and wellbeing needs as much as the person living with dementia. However if you did miss the conference or my session, please feel free to comment on the blog, ask us questions, telling us “what is important to you” as a family member, or a partner or carer to a person living with dementia.
Resources I have found helpful and happy to share with you
- Teepa Snow – Understanding Fronto Temporal Dementia. Pines Education Institute.
- Lisa Radin and Gary Radin (2008) What If It’s Not Alzheimer’s: A Caregiver’s Guide to Dementia. Prometheus Books
Online courses on Rarer Dementias
It’s not always Alzheimer’s…
Alzheimer Scotland has created new materials to support people diagnosed with rarer types of dementia and those closest to them. The information sheets and short film, collectively titled ‘It’s not always Alzheimer’s’, explore eight examples of less familiar forms of dementia including Frontotemporal dementia, Posterior Cortical Atrophy and Semantic dementia. These new information sheets can be found in our ‘Types of dementia’ information section of the website and also here http://www.alzscot.org/news_and_community/news/3549_its_not_always_alzheimers