In Australia, there are more than 330,000 people living with dementia, with the most common form being Alzheimer’s disease. Symptoms from Alzheimer’s disease usually develop slowly and gradually worsen over time, starting with a few forgetful moments and leading to what is a serious brain impairment.
For the families and patients suffering with dementia, life can be very challenging. Many Alzheimer’s patients require full or part-time care and will need support when facing diagnosis. From the very beginning, a good network of carers and moral support will be needed.
How you can help
With dementia being diagnosed earlier than ever before, many sufferers are fully capable of understanding the implications of the disease. For family members, knowing whether or not to share the diagnosis is a common concern. Generally speaking, knowing about the disease allows for an open and honest discussion and gives families the chance to make plans for the future.
Things to discuss include:
- Expected symptoms
- Possible treatments
- Legal matters
- Financial matters
- Specialised services
- Support programs
While Alzheimer’s affects every person differently, planning ahead will make it easier to manage certain affairs should the patient’s condition decline.
In the early stages, your role will be more like a care partner rather than caregiver, as many sufferers are still able to participate in daily activities and conversations. Even so, you may need to help jog the memory with things such as:
- Doctor’s appointments
- Word memory
- Recalling people’s names
- Managing money
- Taking medications
You can also encourage independence by helping to create calendars, notes, medication schedules and bill schedules.
The early stages should be used for educating yourself on the disease, as well as nurturing the existing relationship you have with the sufferer. You can assist by attending a support group with the person or by joining them for an activity they enjoy.
The middle stages are typically the longest and can last for a number of years. Routine tasks can now be a challenge and you may notice the frequent jumbling of words and names. Unable to express or dress themselves properly, a person with second-stage Alzheimer’s can often get frustrated and angry. The key is to understand that for every bad day, there will be good ones too.
During this time, you will need to:
- Remain calm, even when questions are continually repeated
- Offer reassurance
- Give clear instructions and written reminders
- Visit regularly and engage them in conversation
- Be patient
- Offer assistance with daily care needs
- Speak clearly and slowly
On top of this, get creative to better cope with memory problems. Try:
- Recording a book with important information, such as names, who’s married to who, who lives where etc.
- Labeling cupboards and drawers with pictures or words to describe what’s inside
- Making a wall chart with important contacts next to the phone
- Labeling photos with people’s names
- Organising a visiting roster with friends and family
- Organising an outings roster with friends and family
- Making a contact list and info card for their wallet
- Organising home-delivered meals
- Organising the closets and wardrobes
Intensive, around-the-clock care is usually required in the later stages of Alzheimer’s. Often the sufferer has difficulty walking and going to the toilet, and communicating, drinking and eating can become a major problem. Difficulty swallowing can result in airway and lung problems, which can lead to pneumonia.
Your role will be to:
- Help provide a calm and quiet eating environment
- Provide lots of small meals
- Choose foods that are soft and easily swallowed
- Encourage fluid intake
- Monitor weight
- Alternate body position to alleviate pressure
- Maintain range of motion
- Pay attention to oral hygiene
- Clean cuts and abrasions
What if I just want to help occasionally?
If you are not the primary carer and would like to help, ask family members what you can assist with. Small gestures, such as cooking meals, assisting them for a walk, tidying the house, creating an information book or labelled photo album or visiting with a book to read will be greatly appreciated.
You could also consider organising a fundraising event or roster to help the full-time carer/s.