Carers Guide to Dementia

Facts & Figures 

Dementia is a disease of the brain that is progressive and degenerative.  It is characterised by changes in reasoning, memory, comprehension, problem-solving, and/or attention.  It is a disease which is seen more in older people but is not a part of the normal ageing process . 

• 750,000 people are living with dementia in the UK at present.  This figure is expected to double over the next 30 years.  
• As of 2010, 35.6 million people worldwide have dementia. www.alz.co.uk/research/statistics (The Global Voice on Dementia).
• 25% of hospital beds are occupied by people over the age of 65 with dementia . 

 

This resource will help you to: 

• Recall the different stages of dementia and recognise how they apply to the person you are caring for.
• Differentiate between the ‘normal’ aging process and the typical signs and symptoms of dementia.
• Recognize other conditions that may co-exist alongside dementia.
• Identify strategies and techniques that enable you to help someone with dementia to optimize their independence and quality of life.
• Identify dementia services and resources that would be appropriate for the different stages of dementia.
• Relate the information in this resource to your individual circumstances.

Recognition  

Types of Dementia

There are many types of dementia.  More than 50% of all cases of dementia are thought to be due to Alzheimers disease while 10% are due to stroke.  In some cases, the cause may be another disease (eg. Huntington's disease) or from a head injury. 

•Dementia with Alzheimers disease: the most common form of dementia. Loss of nerve tissue along with changes in the chemistry and structure of the brain lead to the death of brain cells.

 

•Vascular dementia: most common after a stroke or a series of small strokes. The blood supply and oxygen supply to the brain is effect and brain cells die. The person may start to forget or have trouble planning ahead. Balance problems can also occur.

 

•Dementia with Lewy Bodies: caused by the breakdown of brain tissue following the formation of abnormal structures in nerve cells. The person will move slower and fall more often.

 

•Fronto-temporal dementia: damage to the front part of the brain causes personality and behaviour changes.  Memory is less likely to be affected in the early stages.

 

•Mixed dementia: has the characterisitcs of both Alzheimers and vascular dementia. The person may present with a mixture of symptoms.

•Less common causes of dementia:

• Motor Neurone Disease
• Multiple Sclerosis
• Huntington's Disease
• Parkinson's Disease
• HIV related cognitive impairment
• Creutzfeldt-Jakobs disease.  
  

•Korsakoff's Syndrome: caused by heavy drinking over a long period that leads to brain cell death and short-term memory loss.  Although not strictly classified as a dementia, it is included here as symptoms are similar.
 

For more informtaion and fact sheets on the different types of dementia visit this site: http://alzheimers.org.uk/site/scripts/documents.php?categoryID=200362

Early Signs of Dementia 

Concern about the possibility of dementia occuring with advancing age is normal. It is important to understand the difference between 'normal aging' and the early onset of dementia. However, there are some aspects of the usual aging process that may be confused for signs of dementia.

Mild Cognitive Impairmentis a term used to describe a condition involving problems with  mental abilities such as thinking, knowing and remembering. People with mild cognitive impairment often have difficulties with day-to-day memory, but these problems are not bad enough to be defined as dementia (reference: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=120

The table below shows some of the early signs of dementia and compares them to normal aging.
 

 

 

What to expect 

 

It can be a difficult time when a loved one is suffering memory problems or diagnosed with dementia. This page will provide a guide to the different stages of dementia and what you may experience caring for someone in each stage.

In those aged over 65 it is thought that 1 in 3 women will fall while 1 in 5 men will fall. This risk is elevated even more if the person is also suffering from Dementia . As dementia is a non-modifiable risk it is important that the fear of falling does not lead to a cycle of inactivity. If this occurs it is important to break the vicious cycle of inactivity by improving things such as the person's mobility, independence and ultimately confidence. The aim is to reduce the fear and associated loss of function.  People with dementia may suffer from depression and/or behavioural problems. They may often become annoyed easily or act aggressively towards a family member or friend.

The three stages of dementia

The table below details the three main stages of dementia and what you may expect in each stage. It is available here as a document if you wish to print it off or save it for future reference. File:Three Main Stage of Dementia.pdf

The three main stages of dementia

Some symptoms may appear earlier or later than indicated on this table and the stages may overlap. The progression through the stages is highly individual. The process of progression for each person will depend on many factors including the type of dementia, ages of onset, the presence of other illnesses, the level of support and care available.

http://www.psychiatry24x7.com/bgdisplay.jhtml?itemname=dementia_symptoms#stages

What physiotherapy can offer 

Physiotherapists use physical approaches to restore 'physical, psychological and social well-being, taking account of variations in health status'. [1] Physiotherapy plays a key role in promoting and maintaining mobility for individuals with dementia. Physiotherapy interventions can improve the quality of life for your loved ones living with dementia and reduce the burden of care. For a leaflet on dementia and physiotherapy follow this link:

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

Exercise prevents and reduces the risk of developing cardiovascular disease as well as other chronic conditions such as diabetes and osteoporosis .  General physical exercise can improve walking, mobility, flexibility, balance and prevent new falls in individuals living with dementia. It is also shown to enhance mood and improve cognitive function .
 

Physiotherapy

The aim of physiotherapy is to increase the persons mobility, lower their risk of falls by doing prevention exercises. Mobility can be increased with balance, stretching and strengthening exercises and the use of walking aids. Poor balance, known to increase the risk of falls, can be improved by physiotherapy-led exercises. A physiotherapist will assess how your loved one performs activities such as; walking, going up and down the stairs, getting out of a chair and getting in and out of bed. Physiotherapy can also assist in reducing the burden of care by educating carers to encourage independence in people with dementia.

Physiotherapy can provide;

•Strengthening exercises
•Stretching
•Proprioception
•Static and dynamic balance
•Flexibility
•Maintain independence
•Postural management

                -->Regular change in body position is essential for comfort and prevention of poor posture which may lead to muscle tightness and spasms, decreased movement of joints and pressure sores. (NHS Postural Management Survey 2012)

• Advice and recommendations on aids; 

                --> Equipment and adaptations at home will help make life easier for your loved one with dementia and keep them independent for as long as possible

• Falls prevention program; 

                 --> Created and used along with the home assessment. This will help to reduce the persons risk of falls as well as their fear of falling and keep them safe and independent at home.

Physiotherapy can help to manage pain. Pain affects cognition, motivation and will affect how the person with dementia responds to any rehabilitation programme. Individuals living with dementia who experience impairments in verbal communication may not be able to easily report pain and are at risk of receiving inadequate medication and treatment of pain. It is important that pain should be assessed before and during interventions to allow rehabilitation .

Physiotherapy also plays an essential role in:

• Promoting and maintaining mobility for people with dementia, by managing positioning, seating and painful contractures.

Exercise can have a significant and positive impact on behavioural and psychological symptoms of dementia, improving function and mood. This in turn may decrease the need for pharmalogical intervention . 
 

What you can do                                                   

When caring for someone with dementia it is important to help them remain as independent and fit and healthy as possible. They should also continue to enjoy their usual activities. The better they feel the more they can enjoy life.
 

The aim of treatment is to slow down the progression of dementia related impairments and control behavioural symptoms. http://www.psychiatry24x7.com/bgdisplay.jhtml?itemname=dementia_treatmemt

What you can do

Learn about the disease

By learning as much as you can about the disease, you will know what to expect and be better able to handle the challenges associated with dementia. 

•Create a daily routine with small rituals

Predictability can be calming. This may help to relax the person. 

•Let the patient do as much as they can independently    

1.Give the person a role/task; doing the washing up, peeling the vegetables, pairing socks.
2.Do less for them
3.Keep requests meaningful
4.If motivation is an issue, make the tasks functional; walk to the kitchen to get a drink instead of carrying it to them.
5.If the person is wandering around or restless, then think about why this might be hapenning.  Some people walk because they are bored, have excess energy or may be responding to hallucination.

By allowing them to do as much as possible by themselves, they will be more likely to retain his/her self esteem. 

•Plan activities that you can both enjoy

If it is realistic to do so, take the person for a walk each day.  It will burn off energy and the fresh air will do you both good.

Other activities can include gardening, baking, listening to music, singing, dancing or playing cards. What is important is that the person is participating in an activity that makes him/her feel useful.

•Prevention of falls

The home can be full of potential hazards contributing to falls. Make sure there is nothing around the house that the person could trip up on.

Communication:

1.Keep commands simple, one request at a time.  
2.Allow extra time for a response to your question before repeating it.
3.If the individual doesn't appear to understand your request, try rephrasing it.
4.Don't chat whilst the person is trying to perform a task, this will likely be a distraction.
5.Make sure communication problems are not due to visual or hearing impairments. Check that glasses and hearing aids are in good working order.
6.Use names and explanatory phrases where possible, such as "Your son, John."

•Other forms of communication which may be useful:

1.Touch can be used to assist movement through directional guidance during walking by placing a hand on their shoulder or by taking their hand.
2. Sounds can provide an extra stimulation to encourage normal movement or to trigger an appropriate response to an instruction. Some peoples walking can improve by providing an external rhythm for example counting aloud or by playing music with a rhythm appropriate to the speed of a person’s walk.
3.Visual stimuli can be used to demonstrate instructions. When performing exercises it is more effective to demonstrate the exercise than to give instructions . 

Mood is usually affected in individuals coping with dementia. Individuals can often become flustered and distressed and in some cases can become aggressive and depressed. Regular movement will balance their mood help to reduce depression and keep them calm. Activity can help improve sleep pattern which can often be disturbed by dementia. Regular routines can include household activities, exercise classes, resistance training and stretching. http://www.healthcentre.org.uk/physiotherapists/physiotherapist-dementia.html

Behaviour management is one strategy that may be used to decrease depression in people with dementia and can be carried out by either carers or family. It is suggested that the reduction of repetitive verbalisations, management of agression and management of eating behaviours in people with dementia has a positive effect on their behaviour and overall well-being . 

Where you can get help 

Where to find help

Use this page to find organisations that offer help and support.

Familly members or those caring for a person with dementia are often subject to extreme stress. Remember you cannot help someone else if you do not help yourself first!

• Join a caregiver support group: This can provide emotional support from others in a similiar situation, provide education and also give you connections to local useful resources. 

Helpful Websites

www.mentalhealth.org.uk

A charity that works across  all age ranges and all aspects of mental health. Type “Dementia” in to the search box for helpful information and publications relating to dementia.

http://www.alz.co.uk/ADI-publications

An international website dedicated to Alzheimer’s Disease. Contains information and support networks for those suffering from the disease and those who are care for loved ones

www.tinyurl.com/krcyhg

The Alzheimers Society. Dementia UK, The full report 2007: This document is an in-depth report on dementia and Alzheimers in the United Kingdom.

NHS & Government Information and Support

For NHS information about dementia follow this link

http://nhs.uk/conditions/dementia/pages/introduction.aspx

For NHS information about support for carers, care homes and financial support follow this link   http://www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspx

For NHS information about health services near you follow this link

http://www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspx

For information on dementia in Scotland and the Scottish government dementia strategy follow this link http://www.scotland.gov.uk/Topics/Health/Services/Mental-Health/Dementia

Voluntary Sector Organisations

For information about Alzheimers follow this link http://alzheimers.org.uk

For information about the Lewy Body Dementia Association follow this link http://lbda.org/

 

For information about the Parkinson's Disease Foundation and research into the disease follwo this link http://pdf.org.uk/

For information about Parkinson's disease and support avalable follow this link http://parkinsons.org.uk/

For information about Huntingtons's disease and support in England & Wales follow this link http://hda.org.uk/

 

Financial Assistance

Learn about financial support you may be able to access  (UK only): 

http://www.nhs.uk/CarersDirect/moneyandlegal/carersbenefits/Pages/Overview.aspx

http://www.nhs.uk/carersdirect/moneyandlegal/carersbenefits/Pages/CarersAllowance.aspx

www.ageuk.org.uk

Carers Support Networks
 

Carers UK is a charity set up to help carers. This website provides information and advice about caring, alongside practical and emotional support for carers. There is an online community network where you can chat online with other carers and share your experiences.

http://www.carersuk.org

 

This is an international carers support network that provides support and friendship between carers online.

http://www.carersconnectint.com/Home.aspx?pid=10

 

Alzheimers and Dementia Support Services (ADSS) is a charity that provides support for carers including a 24 hour help line (0800 500 3014). Calls are free from a landline within the UK but a charge may be incurred from moblies.

www.alzheimers-dementia.org.uk