The end-of-year holidays are sometimes called the “silly season”, but they could just as easily be called the “stressful season”. As joyful as it can be to bring the family together to celebrate, or just relax, this is also a time when people report experiencing heightened depression and anxiety – and dementia carers are particularly at risk.
According to the World Health Organization (WHO), there are around 50 million people living with dementia in the world today. So caring for a loved one with dementia is a heavy burden that millions bear with love, gentleness, and dignity. But that doesn’t mean it isn’t a considerable drain on emotional, physical, and financial resources. Alzheimer’s South Africa says “more than 80 per cent of Alzheimer’s caregivers report that they frequently experience high levels of stress, and nearly half say they suffer from depression”.
Have a family plan
At the end of any year – let alone one as fraught as 2020 has been – finding time to decompress is important. For dementia carers, it is essential, but infinitely harder to achieve when caring for a family member, especially if they have dementia or Alzheimer’s and is so reliant on their time and attention. Some of these strains can be mitigated through preparation and sharing the load.
The first step in planning for the season must be to bring the family together – perhaps with a family Zoom or Whatsapp group call. With the threat of COVID-19 still hanging over our heads, large family gatherings or holidays may be off the cards, but together you can brainstorm options to give the primary carer time off. Even a few hours a week can be a welcome relief. Older children and relatives can volunteer time to be present for their loved one living with dementia – it will be a lovely treat for the patient too.
Memory care activities
Gardening or doing some basic arts and crafts is a stimulating memory care activity for people living with dementia, however, if the family member helping out is not comfortable with these memory care activities, they can merely offer to be present at rest times. Just knowing that there is backup can reduce the mental load on carers significantly, ensuring that the primary dementia carer isn’t always “on call”.
Bring in help
The vast majority of dementia care is done in the home. Research from the Family Caregiver Alliance (FCA) shows that the typical caregiver is a 49-year-old woman, who both works outside the home and provides around 20 hours of unpaid care work to, typically, her mother, over and above their professional work commitments.
There are economic and cultural reasons contributing to this, but the end-of-year rush may be a good time to consider professional help, budget-allowing.
Organisations like Alzheimer’s South Africa can help you find shift carers who are experienced in dementia care, and they will be able to advise on market-related rates. Both carers and their families can find help online through support groups too.
Livewell offers a Facebook support group that aims to provide a safe and accessible space for individuals and families impacted by Alzheimer’s and dementia to connect with each other and occupational therapists experienced in dementia care. You can request to join via the Livewell Facebook page.
Give the gift of holiday care or daycare
If you have a friend or family member who is the primary dementia carer for a loved one living with dementia, then the perfect gift this year might be the gift of time to oneself, in the form of respite care.
Find a dementia care facility that offers short term or holiday care. This can take the form of half-day or full-day dementia daycare, or even overnight and short-term residential care, often equivalent to the cost of a hotel stay.
Just knowing that 24/7 care, meals, activities and medication management is being taken care of, even if just for one day, can be a huge load off for a carer.
“Caring for a person with dementia can be extremely demanding,” notes Gerhard van der Vyver, Family Advisor of Livewell. “The aim of respite care is to provide some relief for carers, and support them in having a break from their caring responsibilities, to look after their own health and wellbeing.”
“Unfortunately, many dementia caregivers don’t even realise that respite care is an option. They push themselves to the point of actual illness before someone tells them that they can get help. As a primary caregiver, you know very well that your loved one depends on you. But they can’t depend on someone who is not caring for themselves as well,” he observes.
Knowing that a loved one is safe, secure, and looked after means a carer can both focus on and enjoy time off, without fear, guilt or worry.
“Carer burnout is common and can be debilitating” continues van der Vyver. “We encourage all carers to try to find some quiet time for themselves this season and we encourage families to come together to help facilitate this respite for the primary caregiver.”