​When a loved one is diagnosed with dementia, Parkinson’s disease or other neurological conditions, a family member often steps up to be their main caregiver. 

Eveline Silva, Senior Principal Psychologist, and Levinia Lim, Genetic Counsellor, both from National Neuroscience Institute (NNI), a member of the SingHealth group, share eight tips to help those new to caring for a loved with a neurological condition.

"When caring for a loved one with a neurological condition, it is important to remember that the person’s ‘core’ is still inside but it can be masked by the condition. Sharing positive memories and doing activities together such as looking at old photos and listening to their favourite music helps to acknowledge the person within the disease and strengthens the bond with the caregiver," advised Levinia Lim.

8 Caregiver tips when caring for a Dementia, Epilepsy, Alzheimer's or Parkinson's Disease patient

 Tip 1: Build up your knowledge

Reading up on your loved one’s condition and how it changes over time will help you understand their needs and plan ahead for road bumps. Visit the NNI's website on patient education brochures, and ask your healthcare team for information about the condition.

The caregiving journey requires practical and coping skills which need to be learnt – check out caregiver training courses and funding availability at www.aic.sg/caregiving.

 Tip 2: Acknowledge the condition

Head injuries, dementia and other neurological conditions cause physical changes in the brain that can affect the way a person thinks and acts, such as unusual behaviours, being unable to find the right words and lack of interest/ motivation. 

When facing such issues, try to remember that it is the condition causing your loved one to act this way and not them deliberately trying to frustrate or hurt you.

 Tip 3: See the person, not the condition

Caregivers can sometimes feel their loved one is no longer the same person because of changes to their behaviour and personality, but this is not the case.

While full-time caregiving can be stressful, it can also be deeply rewarding, offering you an opportunity to prioritise your loved one and spend quality time together without the distractions of work.

 Tip 4: Reassure your loved one they are not alone

“Who will take care of me?” is a common fear of people living with dementia, Parkinson’s disease and other conditions that get worse over time. 

Reassuring them that they are not alone in their journey can reduce their anxiety and help them to be more receptive to conversations surrounding care plans and boundaries (see Tip 5).

 Tip 5: Discuss comfort levels and boundaries

Talk with your loved one about the support they need at different stages of their illness and who could provide this care. This can help ease feelings of burden and guilt for both you and your loved one.

Some people are uncomfortable with family members helping them with personal care such
as toileting and likewise, caregivers may not be keen to do such activities. Therefore, an acceptable solution for both parties needs to be found.

There are many ways to care, and if finances allow, a paid caregiver could provide personal care, allowing family members to have some respite and self-care.

 Tip 6: Prioritise, prioritise, prioritise!

Agreeing to be your loved one’s main caregiver is a major commitment on your time and energy, so prioritise other activities that are important to you and reduce or let go of those that are not.

Caregiving is physically and emotionally demanding, so make self-care one of your priorities. Weave your needs around your loved one’s routine, such as scheduling time-out for yourself when they are napping or attending a daycare centre.

If you like to attend exercise classes, bring your loved one with you if it is possible – staying in their line of sight will provide reassurance for both and will also provide a change of scenery from home.

 Tip 7: Ask for help!

It takes a network of support to care for someone living with a complex medical condition. Asking family members to look after your loved one while you take time-out to exercise or meet friends can create opportunities for them to bond and help share the responsibility of caregiving.

Ask your healthcare team for advice and consider joining a support group which can provide much needed support and understanding.

At support groups, experienced caregivers often have a wealth of knowledge on ways to plan routines, activities and available resources, such as training, respite care and funding.

 Tip 8: Be wary of caregiver guilt and burnout

It is natural to want to provide the best care for your loved one, but setting unrealistic expectations of being an ‘ideal caregiver’ and dismissing your own needs is a recipe for caregiver guilt and burnout.

If you are caring for someone with dementia, check how well you are coping by completing the Dementia Caregivers Checklist using the Memory Care function on SingHealth’s Health Buddy app.

The checklist will assess your well-being as a caregiver and provide tips on how to care for your loved one.

This article was adapted from NeusLink (Issue 19), click the link to read the magazine.

Ref: H24

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