People living with the degenerative neurological condition Huntington’s disease (HD) in Scotland are less likely to think about taking their own life according to a snapshot study.

When compared with international data the Scottish Huntington’s Association (SHA) research found instances of suicidal tendencies to be significantly reduced within the Scottish HD community.

The SHA gathered data from a sample of 610 clients they work with who have tested positive for the faulty HD gene.

They found that a total of just over 5% of people sampled had experienced suicidal tendencies over a set 12 month period. This compares with a research paper by the Leiden University Medical Center in the Netherlands[1] that found that 19% of HD patients there had experienced real thoughts about completing suicide.

Previous published research[2] has shown that patients with HD were shown to complete suicide four to eight times more often than the general population. The Netherlands is the only country that has data on actual suicide as cause of death in the HD community. They recorded a rate of 5.7 suicides per 100 deaths. The average suicide rate among the general population is around 1 per 100 deaths[3].

‘While by no means academically rigorous, it would seem that anecdotally the investment we are making in supporting the HD community is paying off,’ said SHA chief executive, John Eden.

‘Support networks are hugely important to keeping people with any long term degenerative condition in a positive frame of mind. It would seem that the strategy we are pursuing to increase the overall sense of well being and security for HD families is a model that is working.’

The SHA supports families living with HD through a team of specialist nurses, their world leading youth support and a financial wellbeing service.

HD is an incurable genetic brain disorder that usually starts between the ages of 35 and 45 years. It causes three main groups of symptoms: changes to thinking processes – a type of early onset dementia, loss of muscle control and involuntary movements which lead to loss of speech and swallow and mental illness. As it progress those affected will need 24 care. It is also hereditary with each child of those diagnosed at 50% risk developing the disease.

It is estimated there are around 1100 people living with HD in Scotland and about 5000 potentially at risk.

‘The higher rate of suicidality in the HD community, as demonstrated by the Dutch research, is clearly related to the emotional distress of having an incurable condition as well as the psychopathology that is common in the disease. However, as we can see by comparing this data, risks can be reduced by putting in place professional support networks that can significantly improve the quality of life for HD families,’ added John.

[1] Wetzel, H.H., Gehl, C.R., Dellefave-Castillo, L., Schiffman, J.F., Shannon, K.M., Paulsen, J.S., 2011. Suicidal ideation in Huntington disease: the role of comorbidity. Psychiatry Research 188 (3), 372–376.

[2] Farrer, L.A., 1986. Suicide and attempted suicide in Huntington disease: implications for preclinical testing of persons at risk. American Journal of Medical Genetics 24 (2), 305–311.

[3] van Heeringen, K., Hengeveld, M.W., 2009. Suïcidaal gedrag. In: Hengeveld, M.W., van Balkom, A.J.L.M. (Eds.), Leerboek Psychiatrie. De Tijdstroom, Utrecht, The Netherlands, pp. 493–501.