Are you one of the 1.5 million Australians caring for someone with dementia?
Dementia is more common in older people, over the age of 65. While it can directly affect people in their 40s and 50s, its main effect on middle-aged people is to turn them into carers of a parent with dementia. Perhaps that’s you – a member of the ‘sandwich generation’, caring for your growing kids and your declining parents while trying to sustain a relationship, perform well at work, and grab an occasional five seconds of ‘me time’.
What Is Dementia?
Dementia is not a specific disease but a collection of symptoms caused by disorders affecting the brain. It affects someone’s thought processes, behaviour and ability to complete everyday activities such as making a meal. You may notice your loved one struggling to remember things, take part in their usual activities, or care for themselves properly,
Dementia is an umbrella term for the effects of several neurological conditions that cause declining brain function. Common types of dementia include Alzheimer’s disease, vascular disease, Huntington’s disease, Creuzfeldt-Jakob disease, alcohol-related dementia, and HIV-associated dementia.
Caring For Someone With Dementia
So, how do you look after someone with dementia?
Put Yourself in Their Shoes
Try to imagine what it’s like to know you’re not coping anymore, to need someone to shower you or change your soiled underwear. Most of us would feel a sense of shame or embarrassment about that – and your mum or dad probably does too. Most of us have our own illogical fears, which your parent with dementia may also start to display, such as a fear of having water poured over their head, which may make hair washing difficult.
So, try to factor those feelings into how you do things. Remember your parent still has their own preferences and take those into account. Do they like a hot bath or a cool one? Are they more comfortable if the mirror is covered? Would they find it easier to go the toilet if they had a rail to hold? Sometimes, improving the environment helps avoid struggles and arguments.
Talking to a Parent With Dementia
Dementia can significantly affect a person’s ability to communicate. They may lose track of conversations, struggle to find the right word, not be able to grasp what you’re saying, and be unable to express themselves clearly. It’s terribly frustrating for them and for you.
The biggest tip here is to give them time. This is hard to do because life is busy and you have a long list of tasks to complete but it is a great gift to a person with dementia if you simply wait and let them find the word they’re after, or provide a gentle prompt.
If there’s something important that you need to say then you can aid communication by:
- Turning off the TV and remove other distracting background noise
- Using short, simple sentences with one idea at at time
- Staying still and staying where your loved one can see you.
Communication is much more than words, though. Your body language is hugely important. It can communicate love and affection through touch, posture and warm expressions like a smile. Or it can communicate frustration and impatience through eye rolls and shrugs that undermine any loving words you might speak.
Remember that not every communication problem is due to dementia. It’s also possible that your parent is experiencing hearing loss or sight problems – get these checked, just in case.
Providing Personal Care to Someone with Dementia
It’s easy to forget how many different steps are involved in everyday tasks like brushing teeth, getting dressed, cooking or making a cuppa.
People with dementia may struggle with everyday tasks. They may not remember to do them, or miss out crucial steps. They may not care about that activity anymore, they may be overwhelmed by the number of choices involved or make judgements or choices that seem odd. They may also feel uncomfortable being naked in front of you, if you’re helping with intimate tasks like toileting and bathing.
You can help by:
- Simplifying the decision-making process: Make dressing easier by decluttering their wardrobe so there are fewer choices or packing away clothes that aren’t appropriate for the current season.
- Accepting as many of their choices as possible: It doesn’t really matter if their clothes are mismatched or if you think they’re wearing too many layers as long as they’re comfortable. And while you might shower every day, it doesn’t mean they have to.
- Limiting the range of choices: It’s often easier to choose between two definite alternatives, like whether to have a bath before or after dinner.
- Creating privacy: Close the door and draw the blinds for undressing or bathing so that they feel more comfortable.
- Ensuring proper nutrition: Set an alarm to remind them to eat, leave snacks (that don’t need refrigeration) where they can be seen, join them for a meal.
- Adapting to changes in motor skills: If it’s now too tricky for them to use cutlery then change to finger foods. If they’re having trouble getting to the toilet because they can’t undo their buttons, then replace those outfits with clothes that are easy to put on and off (Velcro works well).
- Tweaking the environment: If they’re bathing, make sure the room is warm and that they’re happy with the water temperature. Play some gentle music to set a calming atmosphere. Modify the home to ensure safety by putting rails in the bathroom or getting large clocks or calendars to help them keep track of time.
- Managing continence: See the doctor to rule out infections and get advice on management. Continence problems may be improved by setting reminders to go to the toilet, changing to easier-to-unfasten clothes, making the toilet more obvious, and getting a commode in the bedroom.
Reducing the Risk of Wandering Off
If you’re worried about your parent with dementia wandering off, then listen to that fear and work out how to reduce the risk.
You could chat to the neighbours and make sure they have your number. You could consider getting your parent a personal alarm with GPS to pinpoint their location and geofencing to alert you if they wander beyond a set boundary. You can also try masking the door behind a coloured curtain or putting a big red ‘Stop’ sign on it.
If your parent wanders because they’re restless, then it may help to take them out for a walk to burn off some excess energy.
Manage Your Own Feelings
It can take time to adjust to being a dementia caregiver. It’s a big shift in your relationship with your mum or dad. They’ve taken care of you for as long as you can remember and the role reversal isn’t necessarily easy for either of you. Remember to take care of yourself so you can sustain your role as a dementia caregiver.
How Can Focused Health Care Help?
Looking after someone with dementia is a huge, ongoing job. You will almost certainly have days where you’re exhausted, overwhelmed, frustrated, angry and sad about the situation. That’s why you need support. If it takes a village to raise a child, it certainly takes one to care for a person with dementia.
Focused Health Care is led by Registered Nurses who understand the way dementia affects the brain. We provide quality in-home care for people with dementia, assisting with personal care, social outings and domestic chores. We can help your mum or dad to maintain good grooming, personal hygiene, nutrition, and social connection. We also provide respite care so you can take a break. Contact us to find out how we can help your family.