Caring for people with alzheimer’s

Alzheimer’s disease (Alzheimer’s) is a form of dementia that can be both challenging and distressing for individuals with the disease, and for their carers. Alzheimer’s is characterised by a progressive decline in an individual’s memory, intellect, rationality, social skills and normal emotional reactions. Although the onset of Alzheimer’s is typically slow, the disease will eventually progress until an individual has trouble remembering close family members and caring for themself. There is no cure for Alzheimer’s. However, the symptoms of the disease can be managed.

There are currently 227,300 Australians with dementia (Alzheimer’s accounts for 50 – 70% of these cases). Dementia affects almost one million Australians, who care for family members or friends. Caring for individuals with Alzheimer’s can be extremely emotionally, physically and financially challenging. Individuals with Alzheimer’s can become physically and verbally aggressive when frustrated or confused. Avoiding or easing the frustration and confusion that individuals with Alzheimer’s experience, is key to facilitating more positive interactions with carers. Carers can also benefit by gathering information about the likely progression of symptoms, and by gaining a greater understanding of how best to manage and enjoy living life while caring for someone with Alzheimer’s.

Click here to view ‘Alzheimer’s Disease – look forward’ An in-depth look into understanding and managing Alzheimer’s disease.

It is important to simplify and structure life when caring for someone with Alzheimer’s. One of the most potentially beneficial strategies that can be adopted by carers is a routine or schedule. This applies to mealtimes, activity times, waking, sleeping and rest times. A routine that is carefully planned and unhurried will help maintain a relaxed environment for both the carer and individual with Alzheimer’s. According to Associate Professor Gerard Byrne, Director of Psychiatry at Royal Brisbane and Women’s Hospital, carers who adopt a managerial, highly organised style in their caring role, cope better than carers who adopt a less structured approach.

When caring for an individual with Alzheimer’s, it is important (wherever possible) to maintain a sense of independence and control. Make clothing easy for the individual to put on or take off (e.g., avoid fiddly buttons or zips). Install handrails in the bathroom, and signs that will point them in the direction of the toilet. In particular, the loss of a driving license can be particularly distressing for individuals with Alzheimer’s. Try suggesting good reasons to use public transport and removing temptations to drive like car keys, and the car itself.

It is important to include consistent and regular activities in the routine of individuals with Alzheimer’s. Activities should be simple and enjoyable. They should be planned for times of day when a patient is at their best, to maximise potential enjoyment. Individuals with Alzheimer’s often enjoy activities that involve music or sensation (such as massage). Other activities might include gardening, cooking or painting, depending on the individual. Bright lights, noisy environments and crowds should be avoided.

Exercise physiologist Dr Phil Hamdorf argues that remaining physically active in older adulthood is a way in which we can improve our health and well-being. This includes people with early stages of Alzheimer’s. Gentle exercises can include walking, swimming, dancing and stretching. Exercise should be discussed with the patient’s general practitioner, and should be adjusted to their individual capabilities.

Communication can be become difficult between carers and individuals with Alzheimer’s. Carers can try using gentle, measured tones and short simple sentences to aid in communication. Non-verbal communication such as body language or gesture can also help. Although it can be challenging, it is important to try to be patient and allow individuals with Alzheimer’s to communicate their needs without pressure or interruption. Demonstrating how to do something, rather than only using verbal instruction, can aid in communication.

Negative interactions between patients and carers can be minimised, though not always avoided. Personality changes, confusion and frustration with the symptoms of Alzheimer’s can lead to angry outbursts, or paranoia in patients. Dr Byrne argues that it is important for carers to try to avoid the belief that the patient is being deliberately difficult. Any negative reaction by the carer can escalate the situation and cause further distress.

Mealtimes should (where possible) be at regular times in the day. Play soft, relaxing music in the background to encourage a calm environment. Swallowing can become difficult for individual’s with Alzheimer’s so moistening food with gravy and sauces, cutting food into smaller pieces, and demonstrating chewing of food can help at mealtimes.

Carers perform a vital and valuable role in the lives of individual’s with Alzheimer’s. However, standards of care can deteriorate when carers are stressed, tired, isolated and emotionally drained. Therefore, it is important for carers to maintain their own support network, and to have some time out from caring to relax and recharge. This might include the occasional day away, or a few hours rest. Government funded respite can take the form of out of home respite at day centres, in home respite from care workers, and residential respite for longer-term care. Regular respite can be worked into the routine of individuals with Alzheimer’s and can allow individuals with Alzheimer’s a chance to socialise with new people. Indeed, it is often better for the patient to have a diversity of care.

Carers need to maintain their own hobbies and ensure they keep regular appointments with their doctor. It may also be of benefit for carers to seek out opportunities to share their experiences with other carers.

Tips that can help in managing people with Alzheimer’s include:

1. Don’t blame the patient.
2. Simplify life – to help minimise confusion.
3. Show the patient how to do things – don’t just tell them.
4. Adopt a managerial lifestyle – keep life organised.

Carers should aim to maintain a routine that is calm and relaxed when caring for individuals with Alzheimer’s. This can, in turn, reduce frustrations and confusion, allowing for smooth interactions between carers and individuals with Alzheimer’s.

References

1. Alzheimer’s Australia [Homepage on the internet]. Hawker, ACT: Alzheimer’s Austraila, 2005 [cited 2008 June 2]. Available from: http://www.alzheimers.org.au/index.cfm
2. Alzheimer’s Disease International [homepage on the Internet]. London: Alzheimer’s Disease International; c1997-2008 [cited 2008 Jun 10]. Tips to meet daily challenges; [about 10 screens]. Available from: http://www.alz.co.uk/carers/tips.html
3. The Fisher Center for Alzheimer’s Research Foundation [homepage on the Internet]. New York: The Fisher Center for Alzheimer’s Research Foundation; c2002-2008 [cited 2008 Jun 10]. Alzheimer’s Disease Continuing Care Information; [about 5 screens]. Available from: http://www.alzinfo.org/Alzheimers-Disease-Continuing-Care-Information.asp