Abstract

Objective: This study explores the impact of menopause on a learning disability from the perspectives of people with a learning disability (PWLD) and those who care for them.
Methods: Individual semi-structured interviews lasting up to 1 hour were conducted with 23 PWLDs and 15 carers who were living in the NHS North-East & North Cumbria ICB and NHS South Yorkshire ICB. Similar questions, tailored to each group, explored their knowledge and personal experiences of the menopause, and of how menopause impacted upon a learning disability. The participants provided recommendations to improve outcomes during this significant period in the life course. Data was thematically analysed.
Results: The major themes identified for the carers were:
1. Biopsychosocial impact and support needs of menopause
2. Complexity and overlap of Menopause and Learning Disability symptoms
3. Communication as a pillar of understanding and quality care
4. Knowledge and education as key enablers of quality care
5. The need for holistic tailored support
Analysis identified two overarching themes for PWLD-participants:
1. Understanding and Biopsychosocial impact of menopause
2. Situational contexts – which examined the home, social and community, and medical settings
Menopause brings additional challenges for PWLDs, and little is known of the physical and emotional impact on individuals. Carers had concerns of how to act in the best interests of the PWLDs and suffered from a poor work-life balance. PWLDs and their carers had a limited understanding of menopause and symptomology. Social isolation of PWLDs increased due to tiredness and needing to rest during the daytime. Overlaps occurred between the psychological symptoms of menopause and symptoms of learning disabilities, and practitioners must be wary of diagnostic overshadowing when treating PWLD during menopause. Communication is critical for PWLDs and can be difficult due to healthcare practitioners not adapting their mode of communication or giving them time to effectively process information and ask questions.
Conclusion: To reduce the health inequalities faced by PWLDs, they and their carers require education on menopause and peer support throughout this period. Training in communication skills for healthcare practitioners would facilitate greater autonomy for PWLD in their reproductive and sexual lives.

Funding: NHS North-East & North Cumbria ICB and NHS South Yorkshire ICB.