Living with Dementia

What is dementia?

In South Asian communities there is not one word that can be used to describe dementia. Dementia is a set of symptoms that may include problems remembering, speaking and understanding. It is important to understand that dementia is a medical condition and not a natural part of ageing.

Dementia is nothing to be ashamed of. There is often a misconception in some South Asian communities that if you have dementia, you are being punished for something that has happened in a past life or as a result of black magic. These beliefs often result in a delay in diagnosis but it is really important to get an early diagnosis so you and your family can manage this condition.

Signs and symptoms of dementia

There are many different types of dementia. In the South Asian community, vascular dementia is most common. Dementia affects people in different ways. There are some of the common signs and symptoms with real-life examples shared from the local South Asian community:

  • Difficulty in recalling things or events that have recently happened. Forgetting their way home from shops, names, places, events and dates. “When I eat my lunch I will forget a short while later what I have eaten”.
  • Difficulty remembering how to do everyday tasks. “I knew something wasn’t right as my dad wasn’t able to remember how to use the television remote control”. A woman explained her father kept putting the electric kettle onto the gas hob and melting it as he was used to using a whistling kettle to make a cup of tea.
  • Difficulty with speech and language. A difference in the person’s ability to talk, read and write, having difficulties following conversations or forgetting words. The person affected may also repeat conversations. “A woman who attended our support group kept repeating the same sentences over and over again, other members of the group did not want to sit with this woman as they felt there was something wrong with her but didn’t know what it was”.
  • Appearing confused/disorientated – struggling to reach for things like a cup of tea, or bumping into things.
  • Changes in a person’s personality and mood – As parts of the brain that control emotion are affected by the illness, people with dementia may feel: sad, frightened or angry about what is happening and become withdrawn. “I had always been able to discuss anything with my father, but he started to become argumentative and obstructive and he wasn’t like that before”.

If you or someone you know is experiencing any of the above symptoms, there could be lots of reasons for this. It’s really important to make an appointment with your GP. Don’t worry about these symptoms as although it could be dementia, it could also be any of the following:

  • Anaemia
  • An untreated infection
  • Dehydration
  • Thyroid Problems
  • Diabetes
  • Heart disease
  • Stress
  • Depressions

Some of the conditions above can be easily treated, but all of them need medical advice and can be made easier to live with if diagnosed early.

South Asian communities are more at risk of some types of dementia due to many people living with diabetes, high blood pressure and high cholesterol levels.

First steps – Make an appointment with your GP to have an initial assessment and do tests if required.

Diagnosing Dementia – why get a diagnosis?

  • To rule out fear and anxiety that may be caused by self-diagnosis.
  • A diagnosis helps the Doctor rule out illnesses that may have similar symptoms to dementia.
  • Rule out possible causes of confusion, such as poor sight or hearing, emotional changes, such as moving or bereavement or side-effects of certain medications.
  • Having a diagnosis may mean it is possible to be prescribed medication.
  • A diagnosis can help the patient and their family to plan for the future.
  • Have access to health and community services.
  • Have access to advice, information and support.

Can dementia be prevented?

There’s no certain way to prevent all types of dementia – researchers are still investigating how the disease develops. However, there’s good evidence that a healthy lifestyle can help reduce your risk of developing dementia when you’re older.

You can reduce the risk of dementia by:

  • Having a healthy diet and lifestyle
  • Not smoking
  • Exercising regularly
  • Avoiding fatty foods
  • Keeping mentally active into old age, for example playing Carrom Board, Bingo
  • Keeping socially active
  • Making sure that you manage your diabetes

If your GP is concerned about the possibility of dementia they will refer you for a memory assessment.

Making a diagnosis

  • Background Information – The GP should spend time talking to the patient trying to establish symptoms.
  • Physical examinations/tests – The GP will normally perform a number of tests.
  • Mental tests – The GP will test thinking and memory.
  • Ability to cope – The GP will have access to other services and can refer you such as to social services.
  • Communication – The GP should communicate their findings and actions to be taken.
  • Referral to a specialist – The GP is the usual person to refer someone to see a specialist. A consultant will have more specialised knowledge and experience of dementia.

Memory assessment

It is your legal right to request for an interpreter to accompany you at any GP or Hospital appointment.

If your GP is concerned about your memory they would undertake a standardised memory test. If your GP is concerned about those results they would then make a referral to the memory assessment service who would undertake a more formal test that may include a brain scan.

Can dementia be cured?

There is currently no cure for dementia but there is a lot of research being done. There are medications available that might help to stabilise some of the symptoms of the illness in the early-middle stages of dementia.

Caring for someone living with dementia

If you or a family member receives a diagnosis of dementia, you may feel frightened and anxious. There are services that can help to support you and provide information (see the bottom of this leaflet).

It is important that the person living with dementia is treated with dignity and respected as a valuable member of their family and community.

Caring for someone living with dementia can be both rewarding and challenging and it can change your life in many ways. To ensure your needs are met you are entitled to a carer’s assessment through Manchester City Council.

The following information may provide some advice and tips to support you. At times, the person’s behaviour may become difficult but try to remember it is not the person doing this behaviour, but the illness making them do things:

  • Agree, don’t argue
  • Reassure, don’t lecture
  • Talk about past, don’t say ‘remember’
  • Repeat, don’t say ‘I told you’
  • Encourage – focus on things the person can do

Someone living with dementia may feel as though they are living in an earlier time in their life. They will not understand if you try to explain that they are not. To avoid confusing them, listen and talk about earlier times. Remember, if you look into their eyes the person is still there.

As dementia progresses, the symptoms will change. People may have trouble controlling their bladder and bowel movements. Your GP can provide advice and support about the services available to help you manage this.

Having dementia does not mean an end to daily activities, including driving but you have a legal requirement to notify the DVLA.

Memory box

Memories are very special to us all. If you have memory problems – you may in the future find it difficult to recall your memories. To help you in the future: at diagnosis or whilst you are in the early stages of your illness, think about making a memory box.

A memory box is a box full of items, photos, poems and more relating to a person’s experience and life. Making a memory box is a way of recording and displaying a person’s memories.

Power of attorney

If you have memory problems – due to dementia, you may in the future find it difficult to make your own decisions. This is a real risk, so it’s very important to think about what steps you can take now to make necessary arrangements and plans.

A power of attorney is a legal way of appointing someone you trust to manage your financial and health affairs. To help you decide which type of document is right for your circumstances you should consider the following:

  • Do you need someone to act for you for a temporary period, for example while you are on holiday?
  • Do you wish someone to act for you while you are able to supervise their actions?

If so, then an ordinary Power of Attorney is the appropriate document.

 

Support available

The following organisations can answer your questions and provide you with advice and support:

Greater Manchester Mental Health NHS Foundation Trust (GMMH)

Admiral Nurses provide specialist dementia support that families need. Admiral Nursing Direct:

 

GMMH Recovery Academy – Information and courses available on different mental health topics.

 

Manchester Psychological Wellbeing Service – Provides 1-2-1 support to anyone experiencing anxiety and depression. Referral to this service can be made by completing the on-line self-referral form

MHCC website – Living with Dementia page http://www.mhcc.nhs.uk/dementia/

 

Alzheimer’s Society – Provides advice and support to anyone affected by dementia. Dementia Connect:

 

Manchester City Council Adult Social Care – Help with information about making adaptions to your home, provide advice, assessments and support to help carers.

 

Manchester Carers Network – offer a range of practical and emotional support services to help make a positive difference to carers’ lives in Manchester.

Gaddum House, 6 Great Jackson Street, Manchester, M15 4AX

 

Himmat- A support centre for carers of people with learning disabilities and physical disabilities from a South Asian background.

 

Together Dementia Support – Groups offer support, friendship and activities for people living with dementia and their carers. Specific group is available for South Asian communities.

 

Indian Senior Citizens Centre – Provides a caring environment, stimulating activities and an opportunity to socialise.

 

LMCP – Works with and behalf of older South Asian persons and their carers and South Asian women with mental health needs and their carers.

The Pastoral Centre, 95A Princess Road, M1

 

Wai Yin Society– Provides health and social care to the Chinese and other minority communities.

Wai Yin Society Sheung Lok Centre, Justin Close, Manchester M13 9UB

 

North Manchester Black Health Forum – is a user led registered charity that works with vulnerable adults from marginalised communities living with long-term health conditions, poverty and economic pressures.

 

Bangladeshi Women’s Organisation – Provides information, advice and support to women of any ethnicity and of any age.

  • 360 Dickenson Rd, M13 0NG.
  • 0161 257 3867

 

Community Continence Team – The Community Continence Service provides assessment, diagnosis and treatment for adults with bladder and bowel incontinence. Please speak to your GP who can refer you to this service.

 

Age UK Day Centres:

  • North Manchester, Openshaw Resource Centre, 10, Catherine Street, Openshaw, M11 1WF – Tel: 0161 205 3851
  • Central Manchester, Gorton Care Centre, Melland Centre, Mount Road, Gorton, M18 7QR – Tel: 0161 223 6062
  • South Manchester, Crossacres Care Centre, Peel Hall Road, Wythenshawe, M22 5DG – Tel: 0161 437 0717

 

Driver and Vehicle Licensing Agency (DVLA):

  • 0300 200 7861

 

Created working in partnership with South Asian communities.

Thanks to Alzheimer’s Society for providing information and supporting us with the development of this material.

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