First year with the Indian Deep Engagement Partner

The Indian Deep Engagement Partner (DEP) have completed the first year of their 3-year programme.

Focus group 1 topic: dementia

Objectives

• Understand community awareness and understanding of dementia among Indian communities in Birmingham
• Explore cultural and structural barriers affecting dementia diagnosis, care, and engagement with services
• Identify opportunities for community‑led responses and improvements in culturally appropriate dementia support
• Support our vision of increasing dementia diagnosis and support rates to 75% by 2030

Findings

• Participants reported a low level of understanding of dementia in their communities, and that misconceptions and limited awareness make early diagnosis and support difficult
• Participants reported barriers such as language issues, lack of culturally sensitive care, limited availability of services aligned with religious values and traditions, and poor understanding of cultural family dynamics among providers
• Professional services usually do not recognise religious needs, cultural food preferences, linguistic diversity, or multigenerational household structures
• Carers, who often deliver care alone, described feeling overwhelmed, isolated, and unsupported, particularly where formal guidance or respite is limited
• Participants cited stigma and shame around dementia, leading to not getting help and increased isolation
• Barriers include a lack of staff who speak native languages, culturally insensitive communication, limited culturally appropriate food options, insufficient knowledge of religious practices, and a lack of trust in care homes or agencies

Participants highlighted needs for:

• access to culturally sensitive care services, both care at home and in care homes
• culturally tailored support groups for carers
• dementia information and awareness sessions in native languages
• access to culturally competent professionals who understand cultural norms and family roles
• practical guidance on financial and legal aspects of care
• the Specialised Early Care for Alzheimer's (SPECAL) method was viewed as highly positive, improving emotional stability and dignity for people living with dementia – participants found it culturally compatible because of its emphasis on respect for elders, emotional wellbeing, and preserving dignity in caregiving

Recommendations

• Train staff in the cultural, linguistic, and religious needs of Indian communities – make sure food, communication styles, and routines reflect community values
• Provide dementia information in native languages
• Use community‑based organisations, such as Daya Dementia Awareness, to deliver training and support
• Create culturally tailored carer support groups to reduce isolation
• Provide support on navigating the NHS and social care systems, funding and care entitlements, and legal frameworks around dementia care
• Increase the availability of culturally aligned home care workers, dementia‑aware professionals, and culturally appropriate care homes
• Encourage use of the SPECAL method across dementia services, given its alignment with Indian cultural values and its positive outcomes

Focus group 2 topic: menstrual health

Objectives

• Highlight menstrual health inequalities faced by South Asian (particularly Indian and Punjabi) women, which were not included in local health profiles
• Collect information about the lived experiences of menstrual and reproductive health challenges shaped by culture, stigma, and social expectations
• Understand what makes it hard to access healthcare, support, and culturally competent care
• Identify opportunities for community‑led, trauma‑informed, and culturally sensitive support pathways

Findings

Lived experience

• Severe physical and emotional exhaustion – conditions described as "never‑ending" and affecting daily functioning, mood, and energy
• Feeling dismissed and invisible, as symptoms are usually reduced by healthcare professionals and menstrual pain is treated as "normal"
• Impact across all areas of life, including work, self‑esteem, relationships, fertility, mental health, and social participation, was significant, and many described their condition as a "hidden disability"
• Participants reported emotional and mental health challenges, including feeling overwhelmed, stressed, anxious, misunderstood or judged, loss of confidence, depression, social withdrawal and loneliness

Cultural and family expectations

• Menstrual health is seen as taboo, as silence and shame prevent people from getting help
• Pressure to continue as normal despite pain, especially for the eldest daughters or primary caregivers
• Family expectations around fertility, marriage, and womanhood intensify shame and limit support options
• Some families resisted treatments, such as birth control, because of misconceptions

Barriers to healthcare and support

• Repeated need to self‑advocate to be taken seriously
• Fragmented, inconsistent healthcare pathways with limited holistic management
• Gender, age, and cultural bias – younger women, women of colour, and neurodiverse people report dismissive treatment
• Difficulties getting appointments, and there are long waits and confusing systems

Lack of accessible, culturally relevant information

• Most menstrual health information does not reflect diverse communities and ignores cultural identity, faith, food practices, and lived experiences
• Lack of interpreters, relatable examples, or culturally tailored support

Key impacts on life opportunities

• Loss of education and work opportunities because of pain and sickness
• Strained relationships and smaller social networks
• Negative long‑term impact on career progression, self‑worth, and wellbeing

Recommendations

Improve culturally competent care and resources

• Provide menstrual health care that respects cultural identity, including food practices, faith, and community norms
• Training for healthcare professionals on cultural stigma, gender roles, and the lived experiences of South Asian women
• Produce information in simple, accessible language that reflects cultural foods, practices, and symptoms
• Use apps, personalised resources, and relatable case studies that include South Asian voices and experiences

Expand early, inclusive menstrual health education

• Start menstrual health education early in schools and continue across life stages
• Make sure education is peer‑led, non‑judgmental, and includes reproductive conditions such as polycystic ovary syndrome (PCOS) and endometriosis

Strengthen community‑led support

• Deliver support in trusted local spaces, including gurudwaras and community centres
• Expand community‑led peer groups, shared learning, and safe spaces for open conversation

Improve healthcare pathways and trust

• Make sure women are believed and normalise menstrual health as a legitimate long‑term health concern which needs ongoing care
• Create clearer, consistent pathways for diagnosis, specialist support, and chronic menstrual conditions
• Provide culturally informed endocrinological care, recognising high rates of PCOS in Asian women
• Improve specialist access and recognition of long‑term menstrual health conditions

Focus group 3 topic: ageing well and creative health

Objectives

• Explore what ageing well means to older members of Indian (mainly Punjabi Sikh) communities in Birmingham
• Understand how creative health activities, such as giddha dancing, Boliyan singing and mehndi art, support wellbeing, independence, and social connection
• Identify cultural and structural barriers affecting access to ageing‑well support
• Inform opportunities for community‑led, culturally relevant approaches to improving ageing‑well pathways

Findings

Defining "ageing well"

Participants described ageing well as a holistic experience shaped by:

• belonging and community connection, especially in culturally familiar spaces
• cultural rootedness, keeping access to Punjabi traditions, music, and dance
• information and inclusion, such as knowing what local activities exist
• dignified, cared‑for environments, emphasising clean, safe neighbourhoods

The role of creative health

Creative activities like giddha and boliyan provide:

• improved physical and emotional wellbeing, such as reduced knee pain, better mobility, improved mood
• routine and purpose, helping participants stay active and socially connected
• a sense of being seen, valued, and appreciated
• a unique space of belonging "closer than the Gurdwara," offering connection outside religious or family roles

Value of the Giddha Community Group

Participants described the group as a key space that:

• reduces loneliness and prevents isolation
• helps preserve Punjabi culture across generations
• provides emotional support and a space to share life experiences
• encourages intergenerational sharing of songs, dances, and traditions

Losing the group would mean losing joy, motivation, and physical activity, as well as a meaningful space that brings purpose, pride, and cultural connection.

Accessibility barriers

Participants reported significant challenges affecting participation and ageing well, such as:

• safety concerns such as fear of crime, aggressive begging, and drug use in local areas
• poorly maintained public spaces, for example, uneven pavements, rubbish, food waste, and hazards for people with mobility issues
• cultural and language barriers in community spaces
• mobility and transport issues, such as difficulty walking long distances and feeling unsafe at bus stops
• need for trusted, accessible transport, for example, reliable taxi options

Hope for change

Participants hoped for:

• more creative health opportunities for older Punjabi women
• more sessions and better promotion, so isolated people know about the group
• greater recognition of Punjabi culture within ageing‑well initiatives
• support to sustain community‑led spaces that reduce loneliness and improve wellbeing

Recommendations

• Invest in groups like the Punjabi Giddha Dancing collectiveto help support ageing well
• Support more sessions and a higher capacity to reach isolated older adults
• Improve local neighbourhood environments such as pavements, litter, lighting, and antisocial behaviour
• Provide safer transport options and consider subsidised community transport for older women
• Integrate Punjabi cultural practices, for example, giddha, boliyan, mehndi art, into wider ageing‑well programmes
• Recognise cultural expression as a health‑enhancing activity
• Promote ageing‑well opportunities in Punjabi languages
• Use trusted settings like libraries, Gurdwaras, and community networks to reach isolated older adults
• Expand women‑only creative health groups to reduce isolation, allow expression, and improve confidence
• Make sure environments feel safe, respectful, and culturally aligned

Focus group 4 topic: alcohol consumption

Objectives

• Explore the hidden realities of alcohol use within Indian and Punjabi communities, which are not shown in statistics
• Understand how stigma, cultural silence, fear, and intergenerational dynamics shape experiences of addiction and getting help
• Identify what culturally safe recovery looks like, including the need for trusted spaces, bilingual support, and culturally grounded care pathways
• Highlight family perspectives and the emotional, relational, and structural barriers surrounding alcohol‑related harm

Findings

Hidden realities of alcohol-use

• Alcohol‑related crises are often quiet, hidden, and masked rather than visible – people may continue attending work, family events, and religious spaces while internally struggling
• Distress often shows through subtle signs such as withdrawal, isolation, conflict‑avoidance, emotional shutdown, or creating arguments to hide drinking patterns
• Family denial and silence are common coping mechanisms used to protect reputation, but it does more harm than good

Minimisation as survival

Minimising alcohol use is not always denial. It is usually a survival strategy to protect family members and prevent stigma. It can lead to living a double life, secrecy, and tension, emotional fatigue and confusion for family members, and delay in recognising addiction and seeking help.

Services need to understand minimisation as fear‑based, relational, and culturally shaped, not as resistance.

Representation and trust

• Many participants fear judgment, gossip, and community visibility, which stops them from getting help
• Trust improves when services reflect participants' identities through bilingual resources, staff who understand Punjabi culture, discreet, stigma‑free access points, and support in everyday community spaces

Cultural safety in recovery

• Cultural safety is more important than generic cultural competence.
  A Punjabi‑focused AA meeting in Handsworth was described as transformative because people felt emotionally safe, understood, and able to speak in their own language
• Mainstream recovery spaces were often described as alienating, causing people not to return

Family experiences

• Family members carry heavy emotional loads, often being the "strong one" while suppressing their own needs
• Drinking patterns are often normalised, especially among men, and passed down across generations
• Setting boundaries is challenging because of guilt, communal living, and fear of being seen as disrespectful

What support should feel like

• Participants called for better listening, culturally familiar points to treatment, warm handovers and peer‑supported pathways, and recognition that recovery happens at different paces

Recommendations

Strengthen cultural safety in all services

• Embed cultural safety metrics in commissioning, with focus on Punjabi Sikh communities
• Provide bilingual materials, culturally familiar language, and diverse staff representation
• Treat minimisation as protection, not denial – respond with trust‑building rather than assumptions

More community‑led support

• Fund and formalise partnerships with Punjabi‑focused community recovery groups
• Create culturally safe, gender‑sensitive spaces for women
• Support community‑rooted organisations to provide early intervention and long‑term engagement

Improve family‑inclusive approaches

• Provide tools and support for boundary‑setting within intergenerational and group living contexts
• Recognise the emotional burden on families and integrate family‑inclusive recovery pathways

Transform assessment and engagement

• Shift from deficits ("what's wrong?") to values‑led questions ("what matters to you?")
• Emphasise confidentiality early to reduce fear of community exposure
• Expand warm handovers, peer support, and flexible pathways that accommodate cultural norms

System‑level and commissioning changes

• Create accountability for representation, language access, anti‑racism, engagement and retention outcomes
• Invest in workforce development beyond "awareness" to include cultural safety and reflective practice
• Track data on engagement by ethnicity and locality

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Page last updated: 12 February 2026