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Muslim experiences of dementia

Dr Asma Khan discusses how Muslims' experiences of living with dementia, and of being a caregiver, are related to religious beliefs and practices
© Cardiff University, Asma Khan

Dementia affects both the mental health of people living with dementia, and those who provide care (mainly family caregivers). People from ethnic minority backgrounds are at greater risk of experiencing dementia, and at a younger age (Meri Yaadain website).

In this article we explore how, for Muslims, experiences of living with dementia, and of being a caregiver, are related to religious beliefs and practices (Daher-Nashif et al. 2021). Suleman et al. (2019) suggest that mainstream mental health support provision for elderly Muslims needs to be more appreciative of religious values.

Care for the elderly in the Quran and Hadith

Older people in Muslim societies are often considered a source of spiritual blessing, religious faith, and wisdom. Love and care for the elderly is seen as a source of spiritual reward (Daher-Nashif et al. 2021). The Quran includes commandments around the duty to respect and care for parents (Meri Yaadain website; Suleman et al. 2019; Daher-Nashif et al. 2021).

The Lord has decreed that you worship none but Him, and that you be kind to parents. Whether one or both of them attain old age in their life, say not to them a word of contempt, nor repel them, but address them in terms of honour”. (Quran 17:23, in Daher-Nashif et al. 2021)
The Prophet Muhammad (peace be upon him) considered neglecting parents a great sin. As Abu Hurairah narrated:
The Messenger of Allah (peace be upon him) said: Damn you! Damn you! Damn you! When he was asked, ‘Who was damned, O Messenger of Allah?,’ he replied, ‘He who has elderly parents, or even only one of them is old, but he did not attempt to enter the Heaven by providing good care to his aged parents’. (Sahih Muslim, 2009, in Daher-Nashif et al. 2021).

Recommendations for dementia-care from Islamic scholars

Islamic scholars interviewed in a study conducted by Daher-Nashif et al. (2021) detailed the rules of caregiving for parents as follows:
  • treating them with respect, mercy, preference and dignity, friendliness and concern, turning a blind eye to the older adult’s mistakes and supporting them financially
  • reminding them about prayer
  • greeting, sitting with, talking to and reading verses from the Quran to them
  • being patient and answering their questions and respectfully listening to their repeated stories
  • not sending them to a care home or institution or leaving the older adult with the nurse or domestic worker all day
  • protecting the person with dementia from risks.
Scholars also drew attention to the responsibility of extended family and the wider Muslim community towards older adults.

Experiences of care-giving families

Religious commandments about care for the elderly can mean that age-related mental health problems, such as dementia, are often treated by Muslims as a private family matter. Daher-Nashif et al. (2021) found that caregivers used religious beliefs to understand what was happening to their parents, dementia was understood in three ways:
  • a test from God
  • a punishment from God that would ease punishment on the Day of Judgment
  • a present from God that would guarantee paradise on the Day of Judgment.
In this study, Daher-Nashif et al. (2021) found that changes in parents’ religious practice (for example, forgetting the time, sequence, or content of prayer) was a way for caregivers to notice changes in the progression of dementia, alerting some caregivers to seek medical support. One interviewee said:
She [elderly relative] began to forget the prayer time when she had never done it before. On the contrary, she was the one to remind us sometimes. (Care-giver interview quote, Daher-Nashif et al. 2021).
Religious practices were also used as interventions by families, for example reading the Quran to the person with dementia to calm them down. One interviewee told the researchers:
When she is nervous and listens to the Quran, she calms down. At night, when she wakes up shouting asking for somebody, I open the Quran and she calms down and falls asleep. (Care-giver interview quote, Daher-Nashif et al. 2021).

Recommendations for practitioners and service providers

Daher-Nashif et al. (2021) recommend that practitioners should learn about how Muslims understand mental health problems among older adults as this may improve engagement with mental health support services by those living with dementia and their caregivers. They also suggest that sources of religious authority, like imams, can helpfully promote mental health support for people living with dementia and their caregivers.

The Meri Yaadain website offers the following recommendations around support for people living with dementia:

  • people living with dementia should maintain a regular routine as far as possible, including keeping up with regular prayer and taking part in religious occasions. However, there is no compulsion to maintain routines around religious practice if this is difficult
  • faith communities can help to maintain social connections and are a source of support for people living with dementia and their carers
  • faith institutions, such as mosques, can normalise conversations around dementia by including it as a topic in sermons and hosting activities to raise awareness of dementia.

As with the wider British population, the number of elderly Muslims is set to increase in the coming decades: the percentage of Muslims in England aged 65 and above is forecast to increase from 4% in 2011, to 10% by 2036 (Suleman et al. 2019). Suleman et al. (2019) suggest that Muslim civil society (social entrepreneurs, charities, and philanthropists) need to prepare for these circumstances by influencing mainstream mental health support provision, through co-production and collaboration, so that it is appreciative of religious values in wellbeing and care.

Signposting

For dementia support, contact Meri Yaadain

Visit the Alzheimer’s Society website for support and advice

© Cardiff University, Asma Khan
This article is from the free online

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