Caring for Our Elders: A South Asian Family’s Guide to Dementia Home Care in London
South Asian families in London are balancing tradition and modern life. Dementia has a major impact on family dynamics. Children shift to becoming carers for their parents or wider family. There is the emotional impact of the diagnosis, including grief and anxiety. There is increased stress as the family works out who is going to provide the care. And the primary caregiver can burnout from this stress. Dementia home care can relieve stress and support the family during this challenging time.
Understanding dementia in the South Asian community
What is dementia? Dementia is an ongoing condition involving the decline of brain functioning. Common symptoms include forgetfulness and confusion, memory loss, communication problems and behaviour changes (NHS). South Asian communities are at greater risk of developing dementia and they are less likely to access the care pathway. Dementia in South Asian communities is expected to rise seven-fold by 2051 (Race Equality Foundation).
Dementia or dimanshiya can be seen as a test or a punishment from God, as well as an opportunity to guarantee paradise on the Day of Judgement (Daher-Nashif et al. 2021 in FutureLearn). There is a lot of confusion with other mental health issues like depression, schizophrenia or aging naturally. That’s why getting an early diagnosis for dementia is so important.
Once diagnosed the family needs to have an open conversation with the patient to assess what help needs to be arranged and who can provide that help, especially as the disease progresses. There is no shame in arranging for professional help when the family is unable to assist. Dementia home care can provide short term respite care or long term ongoing care.
Cultural challenges and family expectations
Traditional values teach us respect for elders and family duty and there is an expectation that families will care for relatives at home. In modern London life that is not always possible. Families may live some distance away from their relatives and have busy careers, or families of their own.
The emotions surrounding this sense of obligation (guilt, pride, shame) are powerful and put extra strain on the family relationships. Although the carer may feel that it is now their turn to take care of their parents, they may not be the best person to provide that care. And carers need rest in order to be able to cope with long term dementia care.
Ultimately the patient may not remember family members or may display challenging behaviours that are difficult to cope with if the carer is not trained. Jothno Care & Support’s carers are all trained in dementia care to manage challenging behaviours. Don’t allow fear of judgement of you or the family reputation stop you from seeking professional help.
As an alternative, professional help from experienced carers, whether that is part time or full time live in care, can be seen as doing the right thing for all of your family.
Why dementia home care may be needed
As mentioned, modern family structures are different. They are likely to be smaller households, often with dual-income earners (both husband and wife are out earning), and less available time to assist with care.
Dementia care can be complex. It can include safeguarding the service user, medication management, and managing challenging behaviour. Dementia patients may be confused about time, place and the people around them, causing them to behave in a way that is unusual.
Home care can be a supplement, rather than a replacement for family care. It can be provided as respite care for a few hours a day or a few days a week to allow the family carer to take time off, rest and seek social engagement, or go to work.
Culturally sensitive home care
Jothno Care & Support provides a culturally sensitive home care service. We will match your carer and the care plan to your family. Our care plans can be sensitive to language, dietary needs, religious practices and cultural understanding.
If you are caring for a family member with dementia at home, here are some practical tips:
- Communication – use familiar languages, visual cues and gentle reminders
- Daily routines – provide meals, medication and personal care at the same time each day
- Engagement – continue to encourage the person to be involved in family life and the local community for as long as possible
- Safety – create a safe and comfortable environment for the person with dementia
This is one of the primary reasons we are asked to help with dementia home care. We can support the person to continue living in their own home safely, even as their dementia progresses.
Caring for the caregiver
Look after yourself so that you can continue to provide care to the ones you love. This can mean asking for help without feeling guilt. No-one can provide 24/7 365 days care alone. There is help available. Caring full time over a prolonged period can lead to stress and burnout. A burnt out carer is unable to provide care, so seeking help will enable you to provide better care.
Build awareness and community support
Breaking the silence is important to the future of care. Encourage open conversations within the family and the community. These conversations will challenge stigma and misconceptions. They will change the cycle of late diagnosis and worsening of the condition. Sharing experiences and resources with your local community and religious organisations can help spread the word. They will improve future care provision.
Dementia home care leads to positive outcomes
Seeking help from dementia home care professionals is an act of love, not of failure. Providing the best possible care for your parents and relatives is important and the best possible care may be professional care. The goal is to ensure dignity, comfort and the best quality of life for elders and their families for many years. This fulfils the obligation to look after your parents now it is your turn. It is a positive action for your family and it will lead to positive outcomes.
Our care team is on hand to discuss any concerns you might have about how dementia home care works, what the costs are, and how we manage care plans. Call them on 020 4548 9300 or book a call using the referral form below.