An aunty of mine cares for her husband who has dementia. She doesn’t get much rest and she's often feeling very tired and overwhelmed. She is afraid of leaving him in the house alone. To keep him safe she sometimes shuts him in the bedroom while she is out getting groceries. Some days are worse like when my uncle pushed her the other day and she fell over. Her children have visited less and less since their father became ill. She feels tired mentally, can't rest, unable to sleep no matter how exhausted she is and often feels helpless and hopeless. She's really scared about my uncle and what's going to happen to him and also for her own future once he's gone.

In many communities it is traditional for the family to care for their older or frail members. Accepting help from outside the family can be seen as shameful or a failure. This can be exacerbated by a lack of culturally relevant services, or previous negative experiences of seeking help
outside the family.

There can be a lack of understanding and stigma around some illnesses. This can result in avoiding the older person or neglecting their care.

As in many patriarchal cultures, the role of caring is given to women and there can be strong expectations from the family and wider community that they will fulfil this role. Older women may feel social pressure to continue or feel resigned to their situation.

The extended family and community may prefer and reinforce traditional expectations even when they clash with the needs of an individual. They may or may not realise the impact of expressing their views on a person in an abusive situation. Intergenerational differences around
expectations of caring for the older person may exist.

A person may continue in an abusive situation because they are not aware of other options or supports.

Some older people in ethnic communities had arranged marriages. Love did not always grow between such couples. Whether it was an arranged or love marriage, a couple may have a history of abuse. This could be a habit of shouting at each other and slamming doors, through to physical violence. Where there is a history of abuse, it is likely to get worse with the introduction of a condition such as dementia.

Loss and grief may go unrecognised due to feelings of duty to family members. If the emotions around a significant illness are unacknowledged, the emotional needs of the carer may not be met. This may impact on their capacity to provide adequate care.

Hi Donte'

Your aunt's situation's difficult and unfortunate. We often think about an elderly person with dementia as being the most 'needy', but it's carers that require respite more often than not. Their challenges include sacrificing personal lifestyles as well as physical, mental and emotional aspects of caring, especially when they have little or no help.

There are respite services for aged care available, and if you make a specific request, there may be casual carers with similar ethnic backgrounds that understand cultural challenges.

I worked in similar areas over the yrs and agree there's a gap in cultural service provision in respite, disabilities and aged care.

My suggestion would be to write to the NDIS authority and voice your concerns, or visit the local office closest to you. Not only will this bring a very important issue to their attention, it may open up opportunities for service providers to increase cultural client based operations.

There are cultural diversity policies guiding services, though this is generalised. IMO, it's just ticking boxes to satisfy govt registration and accreditation; sad but true.

I know it's hard for people to ask for help due to cultural expectations, but I think it's up to families to have this discussion. Carers who neglect their own health for the sake of saving face, may well be reducing their own life from stress.

I hope all goes well.

Sez

Hi Sez,

I agree. There are services and supports that can help us understand how to care better for our family and help relieve the pressure of caring. Often there can be a lot of stress in the care relationship. To increase knowledge of culturally relevant services that can provide support is pivotal in order to minimize this stress.

I was reading somewhere the other day that in Australia approximately 1,000,000 carers’ lives are affected by caring for someone with dementia. As members of culturally and linguistically diverse communities in Australia reach old age in large numbers, dementia and other age related illnesses that signify the loss of physical and emotional independence have increased. Stress in the care relationship is common as carers become emotionally and physically tired and relationships change. Issues may occur or increase in this pressured environment potentially perpetrated by the carer, the person being cared for, or both.

The failure of the adult children to support their mother could be neglect. Support could mean helping her access services. They may actively block services from outside the family and allocate the caring role solely to the mother due to the traditional notion that the wife is responsible for her husband's care.

In many cultures it is traditional for the family to care for their older or frail members. Accepting help from outside the family can be seen as shameful or a failure. This can be exacerbated by a lack of culturally relevant services, or previous negative experiences of seeking help outside the family. Such stigma could prevent a family discussing the situation openly and honestly.

There can be a lack of understanding and stigma around some illnesses. Family members may find it difficult to discuss or see physical changes in an older person. This can result in avoiding the older person or neglecting their care.

As in many patriarchal cultures, the role of caring is given to women and there can be strong expectations from the family and wider community that they will fulfil this role. Older women may feel social pressure to continue or feel resigned to their situation.

Would you know if NDIS covers someone with dementia or their carer?

Hi Donte';

Dementia is considered a neurological illness, though symptoms need to be acknowledged when it comes to care and supervision more than their diagnosis. Each stage requires different levels of attention from carers, family and the community.

It's in early stages when families need to get together with medical, welfare and NDIS professionals to create a plan for the future. This should include organising 24/7 care, external services and talking about pressures placed on carers as the illness progresses.

For carers, mental health problems like depression are prevalent, especially due to a lack of social equity. When I talk of respite, it's for the carer to rest, relax, enjoy social connections and recharge batteries, necessary components for ongoing quality care as well as their own needs. Who cares for the carer?

For govt agencies like Health, Home Care, Supported Accommodation, NDIS and Centrelink, home carers are valued assets because they provide a service which would otherwise be dealt with by them. Families might do well to take a page from this book because if that carer dies or becomes ill themselves for instance, the responsibility then falls to them.

Once people enter the supported accommodation sector, control of how their loved one's are cared for is lost. Recent news reports of deaths in aged care facilities tell the story.

To answer your question, yes; the NDIS provides assistance for people suffering dementia and especially their carers. The following link will assist with information;

www.carersaustralia.com.au

I don't know if people realise this, but 'children' are statistically predominant in carer circles. Those with physically or mentally disabled parents/grandparents even as young as 10, fall in this category.

I do understand cultural 'shame' where reaching out's concerned, but limiting family carers rights to care themselves has to change. Hopefully there'd be community ethnic groups to raise this very important issue with as a matter of urgency.

Information + action = community awareness and hopefully, change.

Sez

Thank you Sez,

Great information and very helpful. :)