Promoting Independence for Persons With Dementia

Promoting Independence for Persons with Dementia; A Guide for Carers

This leaflet is targeted at carers and family members of individuals with dementia providing information about ways in which to improve their quality of life.

Background

Dementia is a broad term used to describe a group of symptoms associated with on-going decline of the brains abilities. These include impairment in:

• memory                                                                                    
• intellect
• language
• insight
• social skills 

 

While over 100 different diseases can produce the symptoms of dementia, it is known that Alzheimer’s disease is the most common cause, accounting for more than 50% of all cases. (http://www.alzscot.org/) 

Dementia affects a large percentage of the UK population. There are currently around 750,000 people in the UK living with dementia, and this is expected to rise to 1.4million by 2039. Dementia mainly affects people over the age of 65 and its incidence increases with age.

To maintain a sound quality of life in individuals with dementia, it is essential to maintain their independence as long as possible. However, due to the progressive nature of dementia this can become increasingly difficult.  As two thirds of people with dementia are currently living at home, family members will often have to assume the role of primary carer for their loved ones. Research suggests that carers of people with dementia often display poor health as compared to their age matched peers, and therefore require as much assistance as possible to be able to support persons with Dementia, while maintaining their own well being.  

This leaflet aims to:

1. Help you identify ‘Dementia Danger Signs’
2. Provide you with helpful ideas to promote independence for the individual with Dementia
3. Advise you on when to contact a physiotherapist and how they can provide assistance in caring for an individual with Dementia
4. Highlight dementia services and resources which can be accessed when required.

Noticing Danger Signs

As dementia progresses, your loved one may start behaving differently, moving less or struggle to communicate with you.  There are several 'Dementia Danger Signs' that should be aware of, these are listed below.  If you start noticing any of these, you may need to use methods to help these individuals to maintain their mobility or if you feel these are becoming worse, contact your nearest physiotherapy department.    

Keeping Active

Most dementias will at some point in their course affect areas of the brain that are responsible for movement and balance. By exercising more and keeping active, individuals with dementia keep their joints, muscles and heart in good shape. They also show signs of engaging more with their surroundings when completing fun activities which they enjoy. As the disease progresses problems with mobility will increase. As the caregiver for an individual with dementia there are some things you can do to encourage activity safely.

• Before you consider helping someone walk, make sure they have comfortable footwear, the correct glasses and hearing aids, and that their clothing is secure.
• Every person with dementia will be different in terms of how much ability they have, however it is important to involve them in decision making and make activities specific to what they enjoy.
• Know their strengths and use them to your advantage.
• If they require a walking aid, ensure it is within their reach before walking and if giving assistance, do so at their side so you are both facing in the same direction and move together.
• Be realistic about how much activity can be done at one time. Aim to cover a short distance, to a seat that the person can see. Provide a resting place, such as a chair or stool, halfway.
• Give the walk a purpose- for example, to eat a meal, watch TV, see a visitor, go to the toilet, or do some exercise.
• Reassure the person about their surroundings – for example, if moving from hard to soft floor coverings.
• Make walking an enjoyable experience by talking to the person and paying them plenty of attention.
• If they begin to shuffle their feet when walking, encourage marching so to lift their feet.

For more information on strategies to promote and mainatin independance and keep dementia sufferers active follow this link : http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1631. [1]

Some people with dementia eventually become confined to a bed or chair. If you notice any of the danger signs regarding mobility and feel your loved one requires more and more assistance getting around and completing daily activities then you should seek advice from a physiotherapist on how to help the person to move without injuring themselves. 

A physiotherapist can provide assistance and support by tailoring a unique programme for your loved one which includes:

• Active range of movement exercises to keep muscles strong and flexible and make functional activities easier
• Balance training to improve confidence and reduce risk of falling
• Gait re-education with or without support to maximise mobility
• Practicing functional tasks to enhance independence
• Advise on mobility aids or equipment for the home to ensure safety and promote mobility and function
  

Your Home

File:Home Safe Home.jpeg

Individuals with dementia are upto 4 times more likely to fall compared to those with no cognitive impairment.  Many of these falls can result in hospital admissions.  The home can be full of potential tripping hazards for a person with dementia. To prevent falls, try to ensure the home environment is obstacle fee. Some methods to help with this are;

• Assess each part of the house for trip hazards;

    -Removing objects which may act as an obstacle or provide distraction

    - Removing loose carpets or rugs

    - Ensuring cables or wiring are not lying across the floor

    - Using signs on doors to provide information; bathroom, shower

    - Ensure there is adequate lighting throughout

                                                        - Placement of handrails / grab-rails on stairs, entrances and toilet

• Try to ensure the patient wears suitable clothing and footwear that he/she is unlikely to trip over.
• Encourage the patient to keep physically active as this will help strengthen balance and maintain confidence

If you feel you require more assistance with your home environment or you would like a home assessment then you can request help from a Physiotherapist or Occupational Therapist (OT)

Here’s how the physiotherapist can help

• Provide balance training to improve confidence and reduce the risk of falls.
• Carry out a home assessment and advise on devices which will increase safety and promote functional abilities.
• Increase patient motivation to decrease fear and anxiety.
• Help with exercises for simple everyday things like walking, rising from a chair etc.
  

 
Recognising Pain

Among older adults with dementia who are in long-term care, the amount of people suffering from pain or possible painful conditions is high. Between 43% and 71% of people suffering with dementia are in pain.2 Yet pain is underdiagnosed and undertreated in these patients.3

Some dementia patients have trouble telling their carer or family member that they are in pain because of problems with the working of the brain, problems communicating, and they may also be confused.  In some of these severe cases of dementia, this can leave pain levels being undertreated as many believe that,

• Pain is a normal and expected part of getting old.
• Dementia patients can’t feel pain.

However, these are both untrue and pain can be treated with dementia patients through a good working relationship between both the carer/family and the physiotherapist/GP.The NICE Quality Standard(4) for people with dementia is a guideline which physiotherapists follow to make sure all dementia patients receive the best standard of care they can. This guideline was implemented in 2007 and was developed by the National Institute for Health and Clinical Excellence, which is held in high regard by health profesionals in terms of evidence for treatment. Physiotherapists work as part of a team with for example the doctor making sure high quality, effective care is delivered.  

What you the carer can do:

If you notice your patient or loved one showing any of the 'Dementia Danger Signs' listed above, you should arrange an appointment with your local GP as soon as possible or talk to your physiotherapist about this.  This will allow the medical team to assess whether their medication needs changed or strengthed. This is very important as your loved one may be in fairly severe levels of pain during movements and while dressing, washing, which reduces their quality of life. 

What a physiotherapist can do:

Physiotherapists are trained to recognise if any persons with dementia are in pain during activity or exercise.  It is important to know that pain can affect an individuals motivation to do any exercise or activities. If pain becomes a problem with your loved one, your physiotherapist can provide information to help recognise pain and put in place strategies to help lessen pain levels and improve the quality of life of the patient.

The Coloured Analogue Scale is a scale often used by both physiotherapists and carers to measure the amount of pain that the patient is feeling. The scale goes from 0-10 and the colour changes as the amount of pain changes. The patient is asked to use a sliding bar to tell the carer or physiotherapist what level of pain they are feeling. However it has to be used with caution as the reliability of the scale decreases as the disease progresses. As the patient goes from having mild to severe dementia the scale has been shown by scientific research not to give as true a reflection of how much pain the patient is feeling (5). The physiotherapist can explain and demonstrate this to you the carer/family member and if you feel confident, you can use this at any time to find out if the patient is feeling any pain at that time.

File:Take care of yourself.jpg

 
Caring For Yourself                                                        

As a caregiver, it is important you learn to look after your own needs. Here are a few recommendations to help you cope with the demanding role of looking after someone with Dementia.

Look for support - join a support group where you can learn from others through sharing of experiences

Take care of yourself – make sure to get enough sleep and eat well, make time to relax and talk to someone or keep a diary of your thoughts and emotions - this will help you to make sense of your feelings 

Encourage Independance - Care giving does not mean doing everything, be open to ideas and strategies that will allow your loved one be as indenpendant as possible

Take breaks from care-giving as often as you can by asking other family members to help. Don't be afraid to ask,people will be happy to lend a hand but may feel nervous around the person with dementia.

People can help you best if you: 
• Tell them exactly how you are feeling and what you need.
• Be specific and positive about what tasks you would like them to do
• Let them know you appreciate their help and that it is making your burden slightly less.
• It may be helpful to ask people to help you with everyday tasks such as shopping and cleaning the house. You may think these tasks are unrelated to direct care-giving but a little assistance can go along way. 

Where to Get Help

Guideposts aim to provide services to help all people lead independent lives

http://www.guidepoststrust.org.uk/

http://www.ageuk.org.uk/health-wellbeing/conditions-illnesses/dementia/

http://www.alzscot.org/

http://www.dementiauk.org/

http://www.dementiaweb.org.uk/index.php

http://www.csp.org.uk/professional-union/practice/evidence-base/physiotherapy-works/physiotherapy-works-dementia-care

http://www.nice.org.uk/nicemedia/pdf/CG042NICEGuideline.pdf

http://www.sign.ac.uk/pdf/sign86.pdf

References

2. AGS Panel on Persistent Pain in Older Persons. The management of persistent pain in older persons. J Am Geriatr Soc 2002;50(6 Suppl):S205-S224.

3. Horgas AL, Tsai PF. Analgesic drug prescription and use in cognitively impaired nursing home residents. Nurs Res 1998;47(4):235-42.

4. A NICE–SCIE Guideline on supporting people with dementia and their carers in health and social care. The British Psychological Society and Gaskell. 2007. Available at: http://www.nice.org.uk/nicemedia/live/10998/30320/30320.pdf

5. Pautex, Sophie, et al. "Feasibility and reliability of four pain self-assessment scales and correlation with an observational rating scale in hospitalized elderly demented patients." The Journals of Gerontology Series A: Biological Sciences and Medical Sciences 60.4 (2005): 524-529.