Promoting Independence for Persons with Dementia; A Guide for Carers
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:
- 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 . For more information on the symptoms of Alzheimer's and other common causes of dementia follow these links: (http://www.alzscot.org/); (http://www.nhs.uk/Conditions/Dementia/Pages/Causes.aspx)
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.
Physiotherapy is one way which can help promote independence in people with dementia. A physiotherapist can help reduce the burden of care by educating the carers and providing individually tailored strategies to encourage independence in these individuals. A physiotherapist works as part of the multi-disciplinary team (including Doctors, nurses etc) to ensure a high level of care for people with dementia. The information in this leaflet has been adapted from two up to date national guidelines which recommend physiotherapy as part of the care for these individuals. If you would like more information on either of these, please follow these links;
- National Institute for Health and Clinical Excellence (NICE). Supporting people with dementia and their carers in health and social care. www.nice.org.uk/CG42
- Scottish Intercollegiate Guidelines Group (SIGN). Management of patients with dementia: a national clinical guideline. Guideline 86 tinyurl.com/5uwzdz7
'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, being less physically active or begin struggling 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 which are provided in this leaflet or if you feel these are becoming worse, contact your nearest physiotherapy department.
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.
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.
How can the physiotherapist help?
The physio can provide assistance and support by tailoring a unique programme for a person with dementia 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
For more guidance on what physiotherapy can offer, Neurological Physiotherapy acts a resource centre and provides further information: www.neurologicalphysiotherapy.com/neurological-physiotherapy/index.html
Individuals with dementia are up to 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.
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 . Yet pain is underdiagnosed and undertreated in these patients.
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 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 to be changed or strengthened. 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. 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.
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.
For more information on caring for yourself, The Department of Health released a national strategy called Caring About Carers which is a useful source of support for those caring for people with dementia. The document can be downloaded here through this link: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4006522
Where to Get Help
Guideposts aim to provide services to help all people lead independent lives, this includes those who suffer from dementia: Registered Charity number 272619.
Age UK provides information and advice on all aspects of caring for dementia patients: Registered Charity number 1128267, Updated 2012.
Alzheimer Scotland is the leading dementia organisation in Scotland. They campaign for the rights of people with dementia and their families and provide an extensive range of innovative and personalised support services: Registered Charity number SC022315, Updated 2012.
The mission of Dementia UK is to improve quality of life for all people affected by dementia: Registered Charity number 1039404, Updated 2012.
The aim of dementia web is to help people who suffer with dementia, as well as their family, carers and professionals who care for them, by providing information about the support and care services available.
For patients and carers who are interested in finding out more about the physiotherapist role and agenda with regards to dementia, the CSP website can provide an insight into the roles and responsibilities a physiotherapist has.
The Chartered Society of Physiotherapy (CSP) is the professional, educational and trade union body for the UK's 50,000 chartered physiotherapists, physiotherapy students and support workers. Company registration number RC000107, Copyright 2012.
The NICE guideline aims to support those who suffer from dementia and their carers in health and social care. They do so by making specific recommendations and offering advice on possible interventions to increase the quality of life for all those affected by the disease.
National Institute for Health and Clinical Excellence, November 2006 (amended March 2011).
The SIGN guidleline provides evidence to support the management of people with dementia, First Published 2006.
- Chartered Society of Physiotherapy 2012 http://www.csp.org.uk/publications/physiotherapy-works-dementia-care (accessed 30/10/2012)
- Pinquart M, Sorenson S. Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis Psychology and Aging. 2003; 18(2): 250-67
- Oddy, R. Promoting mobility in patients with dementia: some suggested strategies for physiotherapists. Physiotherapy Theory and Practice1987; 3(1): 18-27.
- 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.
- 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
- 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.