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Information for carers of dementia patients

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Introduction

CarersDementia is the gradual deterioration of mental or cognitive function. Alzheimer’s disease accounts for 50-75% of all cases of dementia. Other types of dementia include vascular dementia (multi-infarct dementia), Lewy body dementia (LBD) and frontotemporal dementia (Pick’s disease).

In Australia, it is estimated that there are 227,300 people with moderate to severe levels of dementia. Furthermore, 57,000 new cases are expected to be diagnosed in 2008. The number of people suffering from dementia is expected to rise due to an ageing population.

As an individual’s dementia worsens, he or she will need more care and assistance. Consequently, many people with dementia live in professional aged care facilities. If you are caring for someone with dementia, you may find the following tips useful.


Dementia and dressing

People who suffer from dementia often have trouble dressing and need assistance from their carers. This can cause them embarrassment and to feel as though they have lost their independence. To help avoid these feelings, try to:

  • Use slip-on shoes
  • Use velcro straps instead of more fiddly buttons and zips
  • Select easily washable clothes that do not require ironing or dry-cleaning
  • Simplify the choice of clothing by laying out a limited number of outfits on the bed
  • Avoid brightly coloured clothing


Dementia and activities

Engaging in activities help dementia sufferers stay occupied and entertained. Some handy hints are:

  • Allow old roles between the sufferer and carer to be established. For example, give them small responsibilities such as setting the table for dinner.
  • Make sure activities are simple and unhurried, allowing the sufferer to complete the activity without feeling pressured by time constraints or other people. For example, painting allows self-expression and relaxation. Carers may have to show them how to begin painting. Remember that this kind of activity will only be complete when the dementia sufferer says it is.
  • Make sure you are in a safe working area. For example, don’t use toxic paints or sharp instruments. This will prevent any accidents and distress occurring during the activity.
  • Plan activities for when sufferers are at their best during the day, to derive the greatest enjoyment from the activity.
  • During the activity, do not overwhelm sufferers by overstimulating them. For example, flashing lights or loud background noises should be avoided.
  • Some people will benefit from activities that focus on sensations. For example, brushing their hair or receiving a massage can be enjoyable activities. Similarly, a sense of rhythm and movement may encourage them to carry out an activity.
  • Play music and encourage them to participate (e.g. clapping or moving to the music).
  • Activities should also be consistent and, if possible, regular. This will prevent the sufferer from feel disoriented or needlessly confused. If multiple carers are in charge of one sufferer, it may be helpful to use a timetable to coordinate activities.


Dementia and communication

CarersDementia sufferers often have trouble communicating. This can be both frustrating and upsetting. It is important to be patient and allow people suffering from dementia to communicate their needs without pressure or interruption.

  • Avoid background noises and distractions to encourage them to focus on communicating with you.
  • Use body language as a way of non-verbally communicating with the patient. Actions may be more easily understood than words, so use a reassuring hand or actions to help you communicate.
  • When you are speaking, use short and simple sentences. A gentle and measured tone will help put a dementia sufferer at ease.
  • Dementia sufferers may become aggressive when they are uncomfortable but cannot communicate their discomfort.
  • Allow time for them to understand and communicate with you.


Dementia and healthy eating

People with dementia often have trouble swallowing. To help them eat, try to:

  • Moisten food with gravy and sauces
  • Cut the food up into smaller pieces
  • Demonstrate chewing to remind them that they must chew as well
  • Stroke their throat to initiate swallowing and gently remind them to swallow each piece of food

People with dementia may also have trouble noticing food temperatures. Check the temperature of food before giving it to them.

To prevent meal times from becoming stressful:

  • Stick to regular meal times
  • Make the environment relaxed and calm by playing music in the background
  • Encourage them to eat all of one food completely before moving on to the next
  • Present the meals on a plate that is not brightly patterned to prevent confusion


Dementia and personal hygiene

People with dementia may no longer be able to maintain their own personal hygiene. It is important to be aware of any personal hygiene issues that develop as their illness progresses.

  • Dementia sufferers may be concerned about the lack of privacy. Darken the room slightly, use covers and blinds over the windows and cover any mirrors.
  • To simplify the process of maintaining hygiene, break each task into a series of simple steps. This will prevent sufferers from becoming stressed and overwhelmed.
  • Use a handheld shower to maintain independence and install appropriate handrails to prevent slipping.
  • Some people with dementia have a fear of water on their head, making it hard to wash them. . It may help to wash their hair in the basin separately.
  • If the sufferer is incontinent, make sure they are regularly and thoroughly washed.


Dementia and sleeping problems

People suffering from dementia may experience trouble sleeping, making them distressed and tired. To prevent sleeping issues from worsening:

  • Cut down on caffeine and alcohol
  • Play soft music in the background when they are going to sleep
  • Have a regular sleeping time and remind them when to go to sleep


Sundowning

CarersSundowning refers to a symptom in which people with dementia become increasingly insecure and restless in the late afternoon or evening. Unfortunately, the general cause for this symptom is unknown. To prevent sundowning:

  • Encourage activity in the morning and rest after lunch
  • Arrange for less stressful activities to occur in the afternoon (e.g. do not schedule washing for the afternoon)
  • Minimise background noise and bright lights when the sufferer is feeling confused or insecure


Wandering

People suffering from dementia may wander from the home. It is important to make sure that they can safely wander, and that they are easily identifiable if they get lost.

  • Tell local people about the person with dementia so they are aware of the situation and are able to help the individual if needed.
  • Buzzers or alarms when external doors are opened will alert carers immediately if the sufferer decides to wander.
  • Relocate locks on doors if the sufferer is wandering dangerously.This will stop the sufferer wandering outside the home.
  • Reduce triggers of wandering (e.g. work clothes or mail to post).
  • Secure the garden area.
  • Make sure the person carries ID at all times. Identification bracelets detailing the name of the person, address and telephone number are useful. Identification cards in Australia can be obtained for both carers and people with dementia.


Dementia and transport

Losing the ability to drive and be independent can be quite upsetting to a dementia sufferer. Amongst carers, it was identified as one of the most emotionally challenging issues that both parties had to deal with. Hints that reduce issues with transport are:

  • Keep an eye on sufferers’ ability to transport themselves. Make sure that someone drives with them at least once a month to monitor their skill.
  • Talk to your licensing authority for guidelines regarding dementia patients.
  • Suggest good reasons to use public transport.
  • Remove temptations to drive (e.g. car keys and the car itself).


Dementia and incontinence

Incontinence is when a person can no longer control their bowels or bladder. If someone has functional incontinence, try to have a regular schedule of taking them to the bathroom, and monitor their fluid intake. Continence should be actively promoted at all times.

People with dementia need to have easy access to the toilet and to feel comfortable. Make sure:

  • The toilet seat is secure
  • Contrasting colours are used to decrease confusion (e.g. between the toilet paper and tile wall, or between the actual toilet and the bathroom walls)
  • Clear signage and directions to the toilet are used
  • Bath mats are removed to decrease the chance or fear of slipping


Hallucinations

Hallucinations can make a person with dementia feel unsettled and frightened. If you are faced with this situation, try to reassure the sufferer and discuss the hallucinations with them in a well-lit environment.


Suspicions and accusations

People with dementia will often be overly suspicious and make seemingly wild accusations. Carers should firstly check that the accusations and suspicions are unfounded.

To reduce aggressive behaviour, look for patterns or triggers of behaviour. It may be a result of discomfort and an inability to communicate the reason. It may also be helpful to keep the environment as familiar as possible to reduce the chance of upsetting the person.


Repetitive behaviour

Sometimes a person suffering from dementia will constantly repeat the same behaviours or ask the same questions. To stop repetitive behaviour:

  • Distract them using actions or by placing a ball in their hands.
  • Use memory aids such as noticeboards or an album of photos of people with names attached to them.
  • In later stages, memory aids may not be as helpful.


Caring for the carer

Caring, at times, can be difficult. These handy hints aim to make the sufferer feel relaxed and at ease, and maintain a sense of independence. Regular schedules and non-strenuous activities will help a sufferer be well and happy. Look to reduce distractions such as competing sounds, bright lights and crowds.

It is important that carers address their own needs as well. There are many support networks and resources available to assist with this, such as Alzheimer’s Australia, the National Dementia Hotline, National Dementia Advisory Service, Commonwealth Carer Respite Centres, and the Commonwealth Carer Resource Centre.

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

 

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Caring for the Carer

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Click here to watch a video on the importance of carers for Alzheimer’s sufferers.

More information

DementiaFor more information on different types of dementia, memory loss and Alzheimer’s disease, see Dementia.

 

References

  1. Social Care Institute for Excellence. Proven practice: Carers of people with dementia. Community Care. 2007; 1681: 38-9
  2. Kumar P, Clark M. Clinical Medicine. 5th Ed. Edinburgh: WB Saunders; 2002.
  3. Alzheimer’s Australia [online]. Hawker, ACT: Alzheimer’s Austraila. 2005 [cited 2008 June 2]. Available from: [URL Link]
  4. Australian Institute of Health and Welfare (AIHW) 2007. Older Australians at a Glance. 4th edition. Cat. no. AGE 52. Canberra: AIHW.
  5. Leong J, Madjar I, Fiveash B. Needs of family carers of elderly people living in the community with dementia. Australian Journal on Ageing. 2001; 20(3): 133-8.
  6. Ribeiro O, Paul C. Older male carers and the positive aspects of care. Ageing and Society. 2008; 28: 165-83.
  7. Care of Patients with Dementia in General Practice: Guidelines. Royal Australian College of General Practitioners. NSW Health 2003.
  8. Australian Institute of Health and Welfare (AIHW) 2004. Carers in Australia: Assisting frail older people and people with a disability. AIHW Cat. No. AGE 41. AIHW (Aged Care Series).
  9. Evers C. Carer support and empowerment. Psychiatry. 2007; 7(2): 80-3.
  10. Bridges-Webb C, Giles B, Speechly C, Zurynski Y, Hiramanek N. Patients with dementia and their carers. Annals of the New York Academy of Sciences.  2007; 1114: 130-6.
  11. Neil W, Bowie P. Carer burden in dementia: Assessing the impact of behavioural and psychological symptoms via self report questionnaire. International Journal of Geriatric Psychiatry. 2008; 23: 60-4.
  12. Razani J, Kakos B, Orieta-Barbalace C, Wong JT, Casas R, Lu P, et al. Predicting caregiver burden from daily functional abilities of patients with mild dementia. Journal of the American Geriatrics Society. 2007; 55(9): 1415-20.
  13. Bruce DG, Paley GA, Underwood PJ, Roberts D, Steed D. Communication problems between dementia carers and their general practitioners: Effect on access to community support services. Medical Journal of Australia. 2002; 177(4): 186-8.
  14. Ulstein I. Commenting on the care of carers. Nursing Older People. 2007; 19(8): 6.
  15. Ulstein I, Sandvik L, Wyller B, Engedal K. A one-year randomized controlled psychosocial intervention study among family carers of dementia patients: Effects on patients and carers. Dementia and Geriatric Cognitive Disorders. 2007; 24(6): 469-75.
  16. Douglas-Dunbar M, Gardiner P. Support for carers of people with dementia during hospital admission. Nursing Older People. 2007; 19(8): 27-30.
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Dates

Posted On: 1 February, 2008
Modified On: 26 October, 2017
Reviewed On: 25 June, 2008

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