Dementia Toolkit PDF
Dementia Toolkit PDF
Dementia Toolkit PDF
Dementia
toolkit
Information for staff
Collaborative Project
Working together to improve care for older people
Within the sections you will find useful tools and case examples to show clearly
how research has been used in practice.
The section on training shows what is available for staff to improve their skills and is
a useful tool in developing a personal development plan as part of the annual
Knowledge and Skills Framework (KSF) process (see appendix 2).
From these general topic areas a list of relevant questions were developed through
a literature search of existing guidelines and discussions with relevant staff
i.e. old age psychiatrist, speech and language therapist, practice effectiveness
managers and training managers within the Trust.
The scoping phase of the project was signed off by the consensus group and the
Practice Effectiveness Subgroup of the Older Peoples Service Delivery Group
(PESOPSDG). The project lead worked within the collaborative project group in
developing the evidence reviews, pilot, revisions and dissemination plan.
The draft document has been reviewed by the contributors, service users and
carers, collaborative project members and PESOPSDG members. The draft was
piloted with staff from a range of grades and disciplines across the Trust to develop
the report in terms of content, structure and ease of use.
National Institute for Health and Clinical Excellence (2007). The guidelines manual [online]
available at: http://www.nice.org.uk/niceMedia/pdf/GuidelinesManualAllChapters.pdf.
Accessed December 2007
The training section of this toolkit in particular can be used to assist staff in their
Knowledge and Skills Framework (KSF) appraisal processes (see appendix 2). The
KSF developmental review process is about ongoing development of all staff and
the application of learning and development acquired. Staff using the dementia
toolkit should be able to find opportunities to learn and develop their skills and
become more effective in their roles.
Disclaimer:
The views and recommendations of this report are a result of a review of existing
research at the time of publication and are not necessarily reflecting all the views of
South West Yorkshire Mental Health NHS Trust, nor does it indicate its endorsement
of a particular approach.
Key to the
and
toolkit
table of contents
Levels of evidence
1++ High quality meta-analyses, systematic reviews of randomised controlled
trials (RCTs) or RCT with very low risk of bias
2++ High quality systematic reviews of case-control or cohort studies. High quality
case control studies or cohort studies with a very low risk of confounding or
bias and a high probability that the relationship is causal
2+ Well conducted case control or cohort studies with a low risk of confounding
or bias and a significant risk that the relationship is not causal
2- Case control or cohort studies with a high risk of confounding or bias and a
significant risk that the relationship is not causal
4 Expert opinion
Strength of evidence
A At least one meta-analysis, systematic review of RCTs, or RCT rated as 1++
and directly applicable to the target population or a body of evidence
consisting principally of 1+, directly applicable to the target population, and
demonstrating overall consistency of results.
Reproduced from Scottish Intercollegiate Guidelines Network (SIGN, 2006). These levels of
evidence are also used when developing National Institute for Health and Clinical Excellence
Guidance.
4. What is the evidence to support the use of validation therapy to improve the
quality of life of people with dementia? 17
5. What is the evidence that structured exercise activity can help maintain or
improve mobility in patients with dementia? 19
8. What training is available for staff working with people with dementia and
their carers within South West Yorkshire Mental Health NHS Trust? 26
Challenging
behaviour and
improving
communication
Challenging behaviours
Service users with dementia may become distressed or anxious and often, staff and
carers will not know why this happens or how to prevent and alleviate this distress.
Challenging behaviours could be shouting, screaming, verbally aggressive
comments or physical aggression. These types of behaviours can often be an
attempt by the service user to communicate their distress over something.
Behaviour management
The term “behaviour management”, is used in research papers to reflect structured
and normally time-limited interventions usually carried out by carers or care staff
with the support of a professional with expertise in this area. Rather than behaviour
management, a better term would be ‘supporting service users with challenging
behaviour’ as this reflects the more person centred care approach the Trust actively
promotes.
• Carers being taught ways in which they can increase pleasant events for the
person with dementia (Gormley, Lyons and Howard, 2001).
• Using assistance with activities of daily living in specific way which attempts to
meet the patient’s need for privacy, social contact, security and independence
(Beck et al, 2002).
Evaluation
This dementia toolkit is designed to be as useful to staff as possible and will be
updated every 2 years. Please tell us your views about the toolkit by completing the
evaluation form on the back of this folder. Your comments will be invaluable to
making sure it is as informative, relevant and user friendly as possible.
References
BECK, C.K., VOGELPOHL, T.S., RASIN, J.H., URIRI, J.T., O’SULLIVAN, P., WALLS, R., et al. 2002.
Effects of behavioral interventions on disruptive behavior and affect in demented nursing home
residents. Nursing Research 51(4), 219-28.
GORMLEY, N., LYONS, D., and HOWARD, R., 2001. Behavioural management of aggression in
dementia: a randomized controlled trial. Age and Ageing. 30(2), 141-5.
LIVINGSTON, G., JOHNSTON, K., KATONA, C., PATON, J., LYKETSOS, C.G., 2005.
Systematic Review of Psychological Approaches to the Management of Neuropsychiatric
Symptoms of Dementia. American Journal Psychiatry 162, 1996-2021.
‘Talking mats’ are a visual framework that uses picture symbols to help people with
communication difficulties understand and respond more effectively (Murphy, 1998).
For examples see:
http://www.speechmag.com/content/files/Microsoft_Word__Talking_Mats.pdf?PHPSES
SID=41275e5a274c300293bda284f914647b
Try to avoid questions that have ‘why’ in them. The reasoning involved in giving an
answer may be too difficult. This in turn could make them annoyed or upset.
Be a good listener. Give the person your full attention and resist the temptation to
finish their sentences or talk for them.
Talk at a slower pace so that the person has the opportunity to grasp what is
being said.
Evaluation
This dementia toolkit is designed to be as useful to staff as possible and will be
updated every 2 years. Please tell us your views about the toolkit by completing the
evaluation form on the back of this folder. Your comments will be invaluable to
making sure it is as informative, relevant and user friendly as possible.
CSIP OLDER PEOPLES MENTAL HEALTH PROGRAMME., 2007. Strengthening the involvement of
People with Dementia [online]. York: CSIP. Available at:
<http://www.olderpeoplesmentalhealth.csip.org.uk/service-user-and-carer-engagement-tool.html>
[Accessed December 2007].
ALLAN, K., 2001. Communication and consultation: Exploring ways for staff to involve people with
dementia in developing services [online]. York: Joseph Rountree Foundation. Available at:
<http://www.jrf.org.uk/bookshop/eBooks/186134810X.pdf> [Accessed December 2007].
MURPHY, J., 1998. Talking Mats: Speech and language research in practice [online]. Aberdeenshire:
Speech & Language Therapy in Practice, 11-14. Available at
<http://www.speechmag.com/content/files/Microsoft_Word__Talking_Mats.pdf?PHPSESSID=41275e5
a274c300293bda284f914647b> [Accessed December 2007].
Carer
stress
and validation
therapy
Burns, 1997). Carers may experience a range of problems for example; depression,
stress, taking care of themselves, finding social support and managing behaviour
An educational and skill building approach would provide carers with information
(for example the carers information and support pack (in Appendix 5) and teach
Depression Centre for Epidemiologic Enhance carers’ emotional 1. Provide educational materials on
Studies Depression Scale wellbeing and skills for safety, caregiving and stress.
CES-D (Radloff, 1977; mood management 2. Teach and practice stress
Irwin, Artin and Oxman management techniques
1999). (e.g. breathing exercises, music
and stretching exercises).
3. Teach and role-play strategies for
mood management and the use
of a thought record.
4. Plan and develop a schedule of
pleasant events
Burden or Screen for Caregiver Improve carer’s knowledge 1. Provide educational materials on
Stress Burden (SCB) scale. of stress and enhance skills safety, caregiving and stress.
A 25-item checklist and strategies for coping 2. Teach and practice stress
designed for carers of management techniques
patients with dementia. (e.g. breathing exercises, music
(Vitaliano et al, 1991) and stretching exercises).
Self care and Questions on routine Enhance carer’s physical 1. Provide educational materials on
healthy check-ups e.g. dentist, well-being and self care self care, preventative health.
behaviours optician, doctors. behaviours. practices and healthy living.
Health problems, 2. Teach healthy behaviours e.g.
sleeping problems, poor nutrition, medication etc.
nutrition.
Social Questions about feeling Enhance carers’ emotional 1. Provide education about the
Support isolated from family and and social support. importance of social support.
friends, having someone Support with care giving 2. Teach how to access community
to talk to about activities. resources.
important decisions, to 3. Practice role play to enhance
provide comfort or to communication with health care
provide a break from providers, family and friends.
care.
Problem Revised memory and Enhance carer’s ability to 1. Provide educational materials on
Behaviours behaviour problem manage activities of daily symptoms of dementia and
checklist 25-item living (washing, dressing, managing behaviours.
checklist of memory, eating, drinking etc) and 2. Structured problem solving and
behaviour and mood behavioural problems. brainstorming of strategies.
problems. 3. Step-by-step strategies to manage
(Teri et al, 1992) troublesome behaviours.
4. Demonstrate and practice
strategies using role play.
Activities of Daily Living (ADL) skill training involves assessing people’s abilities and
performance to understand the underlying factors. The intervention may involve an
individual programme for enabling a person to perform as many of their ADL tasks
as possible themselves. Programmes include graded assistance, which means the
carer providing the least assistance needed at each step. Strategies could include
verbal or visual cues, demonstration, physical guidance, partial physical
assistance and problem solving. Professionals trained in assessments and care
planning with ADLs can devise ADL skill training programmes for use by carers
and/or care staff (NICE, 2006).
1+ A multiple education, support and skills training approach can lead to significant
improvements in carers’ quality of life (measured in terms of depression, burden,
social support, self-care and patient problem behaviours), although this was not
a significant improvement for black or African-American caregivers
(Belle et al, 2006).
Training the carer in the skills to improve activities of daily living can lead to less
disruption and reduced carer stress (NICE, 2006).
When developing a care plan for the carer consider involving the person with
dementia and other family members as well as the primarycarer (NICE, 2006)
and/or care staff (NICE, 2006).
Evaluation
This dementia toolkit is designed to be as useful to staff as possible and will be
updated every 2 years. Please tell us your views about the toolkit by completing the
evaluation form on the back of this folder. Your comments will be invaluable to
making sure it is as informative, relevant and user friendly as possible.
References
BELLE, S.R., BURGIO, L., BURNS, R., COON, D., ET AL., 2006. Enhancing the quality of life of
dementia caregivers from different ethnic or racial groups. Annals of Internal Medicine.
145, 727-738.
BRODATY, H., GRESHAM, M., LUSCOMBE, G., 1997. The Prince Henry Hospital dementia caregivers’
training programme. International Journal Geriatric Psychiatry, 12(2), 183-92.
DONALDSON, C., TARRIER, N., BURNS, A., 1997. The impact of the symptoms of dementia on
caregivers. The British Journal of Psychiatry, 170, 62–68.
EVANS, C., 2007. Cognitive Behavioural Therapy with older people. Advances in Psychiatric
Treatment, 13, 111-118.
GALLAGHER-THOMPSON, D., AND COON, D.W., 2007. Evidence-based psychological treatments for
distress in family caregivers of older adults. Psychology and Ageing, 22(1), 37-51.
IRWIN, M., ARTIN K.H., AND OXMAN, M.N., 1999. Screening for depression in the older adult:
criterion validity of the 10-item Centre for Epidemiological Studies Depression Scale (CES-D).
Archives Internal Medicine, 159, 1701- 4.
NICE. 2006. Dementia: Supporting people with dementia and their carers in health and social care.
Clinical guideline 42. [online] London: National Institute for Health and Clinical Excellence.
Available at: <www.nice.org.uk> [Accessed: 18/06/2007]
RADLOFF, L., 1977. The CES-D scale: a self report depression scale for research in the general
population. Applied Psychological Measurement. 1, 385-401.
TERI, L., TRUAX, P., LOGSON, R., UOMOTO, J., ZARIT, S., VITALIANO, P.P., 1992. Assessment of
behavioural problems in dementia: The revised memory and behaviour problems checklist.
Psychology and Ageing, 7, 622-31.
VITALIANO, P.P., RUSSO, J., YOUNG, H.M., BECKER, J., MAIURO, R.D., 1991.
The Screen for Caregiver Burden. Gerontologist , 31, 76–83.
Validation therapy can also be useful in helping a service user come to terms with
their diagnosis. Denial is often an understandable reaction to a diagnosis of
dementia and staff can use validation therapy to acknowledge feelings such as fear
and anxiety which may help the service user accept and come to terms with their
illness.
Evaluation
This dementia toolkit is designed to be as useful to staff as possible and will be
updated every 2 years. Please tell us your views about the toolkit by completing the
evaluation form on the back of this folder. Your comments will be invaluable to
making sure it is as informative, relevant and user friendly as possible.
References
DOUGLAS, S., JAMES, I., AND BALLARD, C., 2004. Non-pharmacological interventions in dementia.
Advances in Psychiatric Treatment, 10, 171-179.
NEAL, M., AND BARTON WRIGHT, P., 2003. Validation therapy for dementia. Cochrane Database of
Systematic Reviews, Issue 3. Art. No.: CD001394. DOI: 10.1002/14651858.CD001394.
SCHRIJNEMAEKERS, V., VAN ROSSUM, E., CANDEL, M., FREDERIKS, C., DERIX, M., SIELHORST,
H., ET AL. 2002. Effects of emotion-oriented care on elderly people with cognitive impairment and
behavioural problems. International Journal of Geriatric Psychiatry, 17(10), 926-37.
Exercise
activity
and cognitive
stimulation
Across the trust numerous activity sessions occur in older peoples services, some of
which are specifically designed for the more frail individuals. An example of this is
a chair based exercise session where the aim is to improve strength and
co-ordination in a safe way.
Further reading on Jabadao, national centre for movement learning and health:
CRICHTON, S., 1997. Moving is the language I use - communication is my goal.
Journal of Dementia Care, Nov/Dec, 16-17.
PERRIN, T., 1998. Lifted into a world of rhythm and melody. Journal of Dementia
Care, 6(1), 22- 4.
Evaluation
This dementia toolkit is designed to be as useful to staff as possible and will be
updated every 2 years. Please tell us your views about the toolkit by completing
the evaluation form on the back of this folder. Your comments will be invaluable to
making sure it is as informative, relevant and user friendly as possible.
References
COTT, C.A., DAWSON, P., SIDANI, S., WELLS, D., 2002. The effects of a walking/talking program on
communication, ambulation, and functional status in residents with Alzheimer disease. Alzheimer
Disease and Associated Disorder, 16(2), 81-7.
HOPMAN-ROCK, M., STAATS, P.G., TAK, E.C., DROES, R.M.,1999. The effects of a psychomotor
activation programme for use in groups of cognitively impaired people in homes for the elderly.
International Journal of Geriatric Psychiatry, 14(8), 633-42.
NETZ, Y., AXELARD, S., and ARGOV, E. 2007. Group physical activity for demented older adults –
feasibility and effectiveness. Clinical Rehabilitation, 21, 977-986.
TAPPEN, R.M., ROACH, K.E., APPLEGATE, E.B., STOWELL, P., 2000. Effect of a combined walking
and conversation intervention on functional mobility of nursing home residents with Alzheimer’s
disease. Alzheimer’s Disease and Associated Disorder, 14(4), 196-201.
TAPPEN, R.M., WILLIAMS, C.L., BARRY, C., DISESA, D., 2001. Conversation intervention with
Alzheimer’s patients: increasing the relevance of communication. Clinical Gerontology.
24(3/4), 63-75.
Cognitive stimulation
Cognitive stimulation may occur informally through recreational activities, or
formally, for example through a programme of memory provoking,
problem-solving and conversational fluency activities such as face name training.
Evaluation
This dementia toolkit is designed to be as useful to staff as possible and will be
updated every 2 years. Please tell us your views about the toolkit by completing the
evaluation form on the back of this folder. Your comments will be invaluable to
making sure it is as informative, relevant and user friendly as possible.
References
CAMP, C.J., FOSS, J.W., O’HANLON, A.M., STEVENS, A.B., 1996. Memory interventions for persons
with dementia. Applied Cognitive Psychology. 10(3), 193-210.
METITIERI. T., ZANETTI, O., GEROLDI, C., FRISONI, G.B., DE LEO, D., DELLO BUONO, M., ET AL.
2001. Reality Orientation Therapy to delay outcomes of progression in patients with dementia:
A retrospective study. Clinical Rehabililitation, 15(5), 471-8.
QUAYHAGEN, M.P., QUAYHAGEN, M., CORBEIL, R.R., HENDRIX, R.C., JACKSON, J.E., SNYDER, L.,
ET AL. 2000. Coping with dementia: evaluation of four non pharmacological interventions.
International Psychogeriatrics, 12(2), 249-65.
SPECTOR, A., THORGRIMSEN, L,, WOODS, B., ROYAN, L., ET AL. 2003. Efficacy of an
evidence-bades cognitive stimulation therapy programme for people with dementia. British Journal
of Psychiatry. 183, 248-254.
WOODS, B., THORGRIMSEN, L., SPECTOR, A., ROYAN, L., ORRELL, M. 2006. Improved quality of life
and cognitive stimulation therapy in dementia. Aging and Mental Health, 10 (3), 219-226.
Reminiscence therapy
Reminiscence therapy (RT) involves the discussion of past activities, events and
experiences, with another person or group of people. This is often assisted by aids
such as videos, music, pictures, archives and life story books. RT is one of the most
popular psychosocial interventions in dementia care, and is highly rated by staff
and participants. There is some evidence to suggest it is effective in improving
mood in older people without dementia. Its effects on mood, cognition and
well-being in dementia are less well understood.
Reminiscence groups
Typically this involves group meetings where participants are encouraged to talk
about past events at least once per week. This is generally aided through prompts
such as photographs, household and other familiar items from the past, music and
sound recordings.
Life story
Life story typically involves individual sessions, in which a person is guided
chronologically through life experiences, encouraged to evaluate them and may
produce a life story book. Carers are increasingly involved in RT.
Life story work can involve building up a storyboard with pictures and other
documents relating to time periods such as in particular jobs or life events. This type
of work can be a particularly powerful experience for the service user when skills,
talents and experiences in their past are acknowledged and celebrated.
Some quotes from people engaged in life story and reminiscence work are:
References
ITO, T., MEGURO, K., AKANUMA, K., ISHII, H and MORI, E., 2007. A randomised controlled trial of
the group reminiscence approach in patients with vascular dementia. Dementia and Geriatric
Cognitive Disorders, 24 (1), 48-54.
POLITIS, A.M., VOZZELLA, S., AND MAYER, L.S., ET AL. 2004. A randomized, controlled, clinical trial
of activity therapy for apathy in patients with dementia residing in long term care. International
Journal of Geriatric Psychiatry, 19 (11), 1087-94.
WOODS, B., SPECTOR, A., JONES, C., ORRELL, M., DAVIES, S., 2005. Reminiscence therapy for
dementia. Cochrane Database of Systematic Reviews. Issue 2. Art. No.: CD001120. DOI:
10.1002/14651858.CD001120.pub2.
Staff courses,
training
opportunities
and appendix 1-5
This resource provides information about all the relevant additional training
available for staff in SWYMHT dementia care services.
Please note:
Training programmes and events are subject to change and new courses are being
developed all the time. You can find out up to date information from your nearest
education centre. Please call either Fieldhead education centre Wakefield on
01924 328608 or Yearn to Learn at St Luke’s Huddersfield on 01484 343914.
Introduction to person centred For training dates and to book contact Melanie Riley
care 1 day internal course is on 01422 884597 or e-mail [email protected]
available to staff in the For more information about the course contact
Calderdale locality only, however Rebecca Whelan on 01422 882506
planning is in place to develop a
course available to all Trust staff.
Contact Suzanne Wightman on
01484 343499 for details
Life story and memory half day Contact Suzanne Wightman on 01484 343499 or
workshops (running from Andrea Trangmar on 01484 343678 or
September 2008) [email protected]
Supporting documents
Strengthening the involvement of people with dementia toolkit (care services improvement partnership, 2007)
http://www.olderpeoplesmentalhealth.csip.org.uk/service-user-and-carer-engagement-tool/involvement-introduction-.html
Communication between patients, carers and healthcare staff. Essence of care 1 standards. Available at:
http://www.cgsupport.nhs.uk/downloads/Essence_of_Care/Communication.doc
Wakefield staff : A series of 3 Wakefield staff can get further details contact
workshops are run internally for Sue Potts at Horbury Health Centre on 01924 327729
junior medical staff, ward based or e-mail [email protected]
and community clinicians to
increase their knowledge and
understanding of the principles
underlying cognitive behavioural
therapy.
Different courses are offered For further details contact the head of nursing on
depending on current funding – 01924 327506 or associate clinical director on
for example course phlebotomy. 01924 327148.
Contact the relevant dietitian in For South Kirklees staff contact the dietitian on
the first instance. Dietitians offer 01924 512392
training on food and fluid
modifications. For Calderdale staff contact the dietitian
Eating, drinking
01422 281362
and swallowing
difficulties
Additional reading Trust food and nutrition policies and procedures will
be available on each unit by the end of 2008.
Essence of care1 benchmark standards for food and
nutrition available at:
http://www.cgsupport.nhs.uk/downloads/Essence_of_
Care/Food_&_Nutrition.doc
Acknowledgements
Thank you to all the contributors to the information contained in this study and
those who took the time to assist with reviewing and developing this resource.
This includes group members from the focus group, consensus group, collaborative
project group, practice effectiveness group and staff responsible for delivering,
developing or coordinating training both internal and external to the Trust.
Author
Rebecca Spencer, Research Fellow, South West Yorkshire Mental Health NHS Trust
Key Contributors
Dr Virginia Minogue, head of West Yorkshire Mental Health research and development consortium
Professor Stephen Curran, old age consultant psychiatrist, South West Yorkshire Mental Health NHS Trust
Ben Boyd, general manager for older people’s services, South West Yorkshire Mental Health NHS Trust
Maggie Bell, assistant director of workforce development, South West Yorkshire Mental Health NHS Trust
Jackie Davies, learning and development manager, South West Yorkshire Mental Health NHS Trust
Robert Maginnis, practice effectiveness manager, South West Yorkshire Mental Health NHS Trust
Ken Gledhill, lead clinical psychologist for older people, South West Yorkshire Mental Health NHS Trust
Ann Hargate, professional and service governance lead, South West Yorkshire Mental Health NHS Trust
Suzanne Wightman, senior manager practice development for older peoples services, South West
Yorkshire Mental Health NHS Trust
Jo Crossland, acute services manager, older people’s services, South West Yorkshire Mental Health
NHS Trust
Julie Eskins, head of clinical governance, South West Yorkshire Mental Health NHS Trust
Reviewees details
Individual’s Name
Job Title
Place of Work
Reviewers details
Name
Status
This review and plan covers the following period (12 months max)
from:
to:
Jan 2008
Any issues relevant to this PDR (e.g. Gateway issues, additional action plans
used, outstanding issues from previous PDRs or Personal Development Plans):
Contents
Jan 2008
FORM 1 (page 1) Recording Personal Development Review Decisions
(CONFIDENTIAL)
CORE DIMENSIONS
Dimension Subset Full Level Evidence for decision Comments/areas for development
Level Level achieved (actions detailed in PDP)
Communication
Personal &
People
Development
Health, Safety &
Security
Service
Improvement
Quality
Equality &
Diversity
Jan 2008
FORM 1 (page 2)
SPECIFIC DIMENSIONS (if applicable)
Dimension Subset Full Level Evidence for decision Comments/areas for development
(code or title) Level Level achieved (actions detailed in PDP)
Add specific dimensions
appropriate to the post
Jan 2008
FORM 2 V2 Performance Objectives
These will include both organisational and personal
objectives
Objective What support do I need and What are the barriers & how How will I know if this
where will I get it? can I overcome them? activity has been effective
e.g. To reduce sickness and
absence figures
Jan 2008
FORM 2a V2 Personal Development Plan – Learning and Development
What is the development need? Target KSF Dimension How will I know if this activity has
(Mandatory and Essential learning completion date (Dimension and indicators this been effective
activity relates to)
and development research to the
role must be prioritized)
Jan 2008
Personal Development Review and Plan: summary and sign-off
Summary from reviewee or reviewer (if applicable):
This gateway review was / was not* passed successfully (cross through entire sentence if not a Gateway review)
This Personal Development Review and plan has / has not* been jointly agreed.
Jan 2008
Appendix 3
ABC Chart
This ABC chart can be used to record behavioural concerns.
'A' stands for antecedents, that is, what occurs immediately before the behaviour
you observe and can include any triggers, signs of distress or environmental
information.
'B' refers to the behaviour itself and is a description of what actually happened or
what the behaviour 'looked' like.
'C' refers to the consequences of the behaviour, or what happened immediately
after the behaviour and can include information regarding other people's
responses to the behaviour and the eventual outcome for the individual. It can also
be a good idea to keep track of where and when the behaviour occurred to assist
in identifying any patterns.
Worried
■ “How will my family cope”
■ “Will my family be OK”
Sad
■ “Things get on top of me”
■ “There doesn’t seem much point in making an effort”
Guilty
■ “I feel bad asking for help”
■ “I don’t want to burden anyone”
Alone
■ “No one seems to understand”
■ “Sometimes I feel I am tackling this on my own”
Frustrated
■ “I just can’t do the things I used to”
■ “Sometimes I just feel like screaming”
Page 01 Page 02
2 What is dementia?
Answers to some commonly asked questions ■ Have problems recognising people
‘ I knew him from somewhere, but I couldn’t
What is dementia?
remember where’
■ Dementia is not an emotional or psychological
disorder. It is the name given to a range of ■ Find it more difficult to complete tasks and
symptoms caused by physical changes in the solve problems
structure of the brain. These changes lead to ‘Cooking has become more difficult. I have
problems with memory, thinking and actions. problems working out what comes next’
Illnesses which cause dementia ■ Find it harder to concentrate
■ Alzheimer’s Disease ‘My mind wanders sometimes’
This is the most common form of dementia.
During the illness physical changes take place Is there a cure for dementia?
in the brain. ‘Plaques’ and ‘tangles’ made from There is no cure yet for dementia. Drugs are
proteins develop in the brain tissue. This leads now available to treat some of the symptoms
to the death of brain cells and dementia. of Alzheimer’s disease. They are usually given
to people in the early to middle stages of the
■ Vascular dementia
illness. They don’t work for everyone.
Blood normally takes oxygen to the brain cells.
If the blood supply is disrupted, as a result of
a stroke for example, brain cells may die.
Who gets Dementia?
Dementia affects people of all ages,
This may lead to dementia.
although it is more common in older people.
■ Dementia with Lewy Bodies Over 700,00 people in the UK have dementia.
In this form of dementia small protein bodies – You are not alone!
or ‘Lewy bodies’ – develop in the brain.
This causes the death of brain cells.
■ Pick’s disease or front-temporal dementia
Will my children inherit my dementia?
It is unlikely. Scientists are currently
This is one form of fronto-temporal dementia
researching the question of whether you
These are just a few of the many different types can inherit dementia. We are likely to
of dementia. know more over the next few years.
Page 03 Page 04
3 Learning to live
with dementia and Learning to live with dementia Everyday tips
Remember: These tips have been suggested by people
everyday tips You are not alone in facing dementia.
Many people have been through a similar
with dementia.
Keep a note book or diary
experience. Here are some tips from other ■ Write down important things you want to
people with dementia. There’s a lot you can remember. This might include appointments,
do to make your life easier. people’s names, a list of things to do, any
thoughts and ideas you want to remember.
Talking helps
■ If you can, talk to your friends and family Have a daily newspaper delivered
about your worries. Don’t bottle things up. ■ The date and the day of the week are always
“If you keep it in it sends you up the wall” on the front page. Or buy a clock with the
date on it.
Get Support Have a routine
■ We all need extra help at some point in our ■ Doing things in the same order each time can
lives – don’t be afraid of asking for support. help.
Think about joining a group with other people
with dementia. Write reminders to yourself
“Having someone to turn to is very important” ■ Lock the door at night or put the rubbish out
on a certain day, for example. Put a note on
Find out about dementia the front door to remind yourself to take your
■ You have the right to know about your illness keys with you.
and what will happen in the future. Maintain your skills by doing the things
“I want to know. I want to be fully armed so I you enjoy
can get the most out of my life” ■ Your local occupational therapist can advise
you on what equipment might help you.
Tell other people about dementia They can be contacted through your GP,
■ Explain what you know about dementia. Other consultant or through social services.
people need to understand what you are going
through, they may be able to help.
“People know very little about this, very little.
It’s ignorance I know, but if I know more I can
tell them more”
Page 05 Page 06
4 Planning for the future
Working Can I still drive? An advance directive doesn’t allow you to Trusts
If you are working you may be A diagnosis of dementia is not ■ Ask a doctor to do anything unlawful. ■ Consider setting up a trust if you own your
having some problems in your in itself a reason to stop driving. You cannot ask a doctor to help you die, own home or have a lot of savings. A trust
job as a result of your dementia. You will eventually have to stop, for example. can administer your money and property
When you feel ready, speak but many people continue to ■ Refuse basic care – this includes food, for your benefits.
to your employer about your drive safely for some time after drink and pain relief.
diagnosis. It will be easier if they their diagnosis. Regular reviews Ways of getting extra money
are involved from the beginning. and support can help you decide Setting up an advance directive ■ You may be entitled to a number of benefits.
how long you can continue ■ You can set up an advance directive through a These may include attendance allowance,
Get help to drive. solicitor, or you can fill in a prepared form. It disability living allowance, income support,
■ From the start, seek advice and should be reviewed regularly to ensure it is up incapacity benefit, council tax discount and
Who to inform
support. This could be from to date. Speak to your close friends or housing benefit. You may also be eligible
■ You must, by law, inform the
your trade union, your local relatives. Involving them will help them for help with your mortgage payments
Driver and Vehicle Licensing
citizens advice bureau or from understand your wishes.
Authority (DVLA) that you have
the disability employment dementia. The DVLA will make These benefits are yours by right, if you qualify.
adviser at your local job centre. a decision about your ability to
Sorting out financial affairs They could make a real difference to your life.
It is important to sort out your money.
■ You can also discuss the effect continue driving. Contact the
Drivers Medical Group, DVLA, For information on benefits and how to apply
that dementia has on your This will
Swansea, SA99 1TU. for them contact:
work with your GP or ■ ensure things are set up in the way you want.
consultant. These people can ■ You must inform your car
insurance company of your ■ Make sure all your important papers are in The local Benefits Agency
help you think things through.
diagnosis. This is to ensure that order. These might include bank and building Wakefield: 01924 433600
They can also support you
your car insurance continues to society statements, mortgage, rent, insurance, Pontefract: 01977 692800
through the process of
be valid. wills, tax and pension details. Consider setting Hemsworth: 01977 624000
speaking to your employer.
up direct debits and standing orders for your National: 0800 882200
Carrying on in work Living Wills regular bills.
Advance directives (also known as Wakefield and Five Towns Branch of the
■ Your employer should consider ■ Think about discussing your plans with
living wills) allow you to outline Alzheimer’s Society
what they could do to help. someone you trust so they are aware of your
the treatment and care you 01924 373264
They might, for example, wishes.
consider reducing your hours or would like in the future.
■ Your can arrange for someone to collect Age Concern
modifying your role/job.
In an advance directive you can pensions and benefits. Inform the benefits Wakefield: 01924 305733
■ Financial assistance is ■ Give your consent to particular agency that you wish to make regular Castleford: 01977 552476
sometimes available for forms of treatment. arrangement for someone to collect any
employers to meet the cost of ■ Refuse certain treatments benefits on your behalf. Legal advice
supporting someone in their ■ Give the name of someone you ■ When completing all legal documents it is
job. The disability employment want to make decisions about Enduring power of attorney advisable to seek advice from a solicitor.
advisor at your local job centre care and treatment on your ■ An enduring power of attorney is a legal way A solicitor can ensure that documents are
will be able to help. behalf of appointing someone you trust to manage completed in the correct way. They will make
your financial affairs. The person you nominate sure they are legally valid.
must be appointed now, when you feel able to ■ The Alzheimer’s Society has a list of solicitors
organise your own affairs. They will only take who have helped other people with dementia.
over if and when you can no longer manager
on your own.
Wills
■ A will ensures that your money and possessions
are given to those close to you when to die.
Page 07 Page 08
5 Where can you
get support? You may feel perfectly well, physically fit and
that there are no problems, which is great.
Other voluntary organisations
■ The Wakefield Branch of the Alzheimer’s
However, most illnesses that cause dementia Society 01924 373264 offers information, advice
are progressive, which means that eventually, and support. Alternatively you could ring the
you will find things difficult and will need National Helpline Number on 0845 300 0336.
extra help. It’s a good idea to learn about
additional support now, so that when you ■ MIND Matters counselling services can provide
actually need help, you and your family information on services and where to get help
will know where to go. Telephone: 01924 360880.
Support from Social Services ■ Age Concern offers services for older people,
■ Social Care Direct covers the Wakefield and Five including advice and information:
Town’s area. They are a dedicated social work Telephone: 01977 552476/552475.
team who are the first point of contact for
social care services and deal with new requests ■ Wakefield Samaritans provide emotional
for services. support for people in a crisis. You can call
Telephone: 01924 303456 (24 hours a day) them any time, day or night.
Telephone: 01924 377011
Support from your doctor
Your GP and/or hospital consultant can help you
through problems and decisions. They may also
Additional information
■ Contact your local social services department,
be able to put you in contact with other local
library or citizens advice bureau for further
services.
information on services in your area.
■ Community psychiatric nurses can help with
practical and emotional issues
■ Occupational therapists can provide advice on
equipment and ways of making life easier
■ Physiotherapists can give advice on keeping
mobile
■ Speech therapists can help with language
problems
Support from a counsellor
■ Some people find talking to a counsellor a
great help. A counsellor is someone who is
trained to listen. It’s important to find the
right counsellor. You must feel comfortable
talking to them.
Page 09 Page 10
6 Useful contact numbers
Age Concern Help the Aged
Wakefield: 01924 305733 0808 8006565
Castleford: 01977 552114
Memory Service
Alzheimer’s Society 01924 328637
Wakefield: 01924 373264
NHS Direct
Helpline: 0845 300 0336
0845 4647
Benefit Enquiry Line
Pals Office
Tel:0800 882200
(patient advice & liaison service)
Textphone:0800 243355
Wakefield:01924 212672
Community Mental Pontefract:01977 606232
Health Teams
Samaritans
Ossett:01924 327787
01924 377011
Castleford:01977 605507
Social Care Direct
Continence Advisory Service
01924 303456
01977 605516
Carers Wakefield & District
Sir Jules Thorn Centre
01924 305544
01977 605530
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Contents
What is dementia?
page 1
1
Next steps
page 3
2
Carers - looking after yourself
page 7
3
How health professionals can help
page 9
4
Understanding and respecting the person with dementia
page 11
5
Activities
page 15
6
Communication
page 17
7
General Health
page 19
8
Living alone
page 23
9
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1 What is dementia?
Page 01
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2 Next steps
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Once dementia has been diagnosed it is You should ask whether the person with
important to consider what to do next. dementia is eligible for Disability Living
Allowance or Attendance Allowance and
Services and support whether, as a carer, you are eligible for
Accessing services and support at the right time Invalid Care Allowance.
can make a great difference, both to the person
with dementia and their family and friends. Enduring power of attorney
The local authority has a duty to carry out Anyone with dementia who owns a property
a community care assessment, which will assess or investments, or has an income other than
the person’s needs and decide which services benefits, should consider making an enduring
can be arranged to meet them. An assessment power of attorney. It is not too late if the
can be made by contacting Social Care Direct person with dementia can show that they
on Wakefield 01924 303456 are aware of what is involved.
Services arranged by local authorities are known More information about this can be found
as community care services. These may include: in the leaflet ‘Financial and Legal tips’ which
■ Home Care is available by contacting the Alzheimer’s
■ Equipment and Adaptations Society on 01924 373264.
■ Day Care Services
■ Respite Care and Residential or Nursing Care Health
A person with dementia should see their GP
The financial situation of the person if they feel unwell or if there are any concerns
with dementia will be taken into account. about their health. Even minor complaints can
They may have to pay something towards make a difference to a person’s well being
the cost of the services. and ability to cope. Many conditions, such as
infected leg ulcers, constipation or chest
Voluntary organisations provide services for carers infections, can cause additional confusion
such as information, helplines, support groups, and distress that often diminish once treated.
lunch clubs and home care schemes. You can
contact the Alzheimer’s Society for further details. Depression is very common in early-stage
dementia and the GP should be consulted
Financial and legal affairs if this is suspected. The GP can refer people
The person with dementia should arrange to other health professionals, such as
their affairs while they are still able to do so. community nurses and specialists.
You should obtain advice from a solicitor when If the person with dementia is already on
completing legal documents. A list of solicitors medication, they should check with their GP
who have experience of helping people with whether it is essential. Some medication can
dementia can be obtained by contacting cause side effects that can lead to confusion.
Law Net on 01926 886990. The same applies to over-the-counter medication.
You should also make sure that important At present there are no treatments that can
papers are in order and can be easily found. reverse the progress of dementia once it has
These might include bank and building society developed. However, there are some medications,
payments, insurance policies, a will, pension which can alleviate some of the symptoms
details etc. Consider setting up direct debits of Alzheimer’s disease for a limited period of
or standing orders for regular bills, so that time, although they don’t work for everyone.
no one has to remember to pay them.
People with vascular dementia will be treated
Benefits for their vascular disease to try to prevent it
It is important to check that both the person from worsening. This may involve taking
with dementia and their carer claim all the drugs to lower blood pressure and making
benefits to which they are entitled. lifestyle changes.
You could make enquiries through the
following places whocan give advice The person with dementia should have regular
about benefits and how to make a claim sight, hearing and dental check ups:
■ The government website: www.dwp.gov.uk ■ Problems with sight can exacerbate confusion
■ The benefits enquiry line Tel: 0800 88 22 00 ■ Hearing difficulties can increase feelings of
■ Your local dept for work and pensions: isolation
Wakefield: 01924 433600 ■ Problems with teeth, gums or dentures can
Pontefract: 01977 692800 result in discomfort and distress.
Castleford: 01977 464111
Hemsworth: 01977 624000
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Driving
A person diagnosed with dementia does not
necessarily have to stop driving immediately
but it is important to ensure that they are still
driving safely:
■ They must inform the Driver and Vehicle
Licensing Authority (DVLA) of their diagnosis,
Tel: 0870 600 0301 or write to DVLA Driver’s
Medical Unit, Longview Road, Swansea,
SA99 1TU
■ They must inform their insurance company of
their diagnosis, or their insurance may become
invalid.
Working
If the person with dementia is still working and
is experiencing any difficulties in their job, they
should talk to their employer or get advice as
soon as possible. Advice is available from:
■ Their human resources department or
trade union
■ A local Citizens Advice Bureau
■ A disability employment adviser at their local
Job Centre
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It is all too easy to ignore your own needs ■ If you start feeling depressed, anxious or
when caring for someone with dementia and stressed, see your GP as soon as possible. This is
forget that you matter too. It is important easier to tackle at an early stage before it gets
to take steps to safeguard your own health out of hand
and well being, so that you can continue ■ Try to ensure you eat a balanced diet. It will
to cope and retain your confidence. help you feel and cope better
■ Make sure you get enough sleep. If your sleep
Help that is available is continually broken, ask your doctor, social
Try to discover what help is available in caring for worker or community psychiatric nurse for
the person with dementia before you might need advice
it. That way when you do need to access services ■ Take care to avoid damaging your back if you
you will know who to turn to. The Alzheimer’s are helping the person to move
Society can provide information on all dementias, ■ Regular exercise is vital for your health and will
put you in touch with local support groups, give you more energy. Try to walk in the fresh
help you to access services and provide air each day or do some exercises at home.
a listening ear.
Legal and financial
Ask for an assessment of the needs of the person Your financial and legal situation may be affected
you are caring for, if one has not already been if you are caring for a person with dementia:
carried out. Your needs as a carer should be ■ If you are working and have to give up either
taken into account in any assessment. The Carers temporarily or permanently, check your pension
(Recognition and Services) Act 1995 gives carers position
the right to a separate assessment of their needs. ■ Check whether you are entitled to benefits and
Ask social services about this. if so which ones
■ Check your own position with regard to the
Family and friends person’s home and finances if they go into
Even though you may be coping well at present long-term care or die.
you need to realise that caring for a person with
dementia will probably become more and more Time to yourself
demanding, both physically and emotionally. Make sure that you have some time to yourself
■ Try to involve other family members right from to relax or to do something that is just for you.
the start so that the responsibility does not all If the person you are caring for cannot be left
rest with you. Even if they cannot offer day-to- alone ask whether there are any services for
day care, they may be able to look after the the person with dementia that could relieve
person while you have a break. Or they may be you of some of the stress. The Alzheimer’s
able to contribute financially to the cost Society can help you to access this information.
of care
■ Always try to accept help from friends or Support
neighbours when it is offered. If you say you Every carer needs support and people with
can manage they may not think to ask whom they can discuss their feelings.
you again
■ Suggest ways in which people could help. For You may get the support you need from friends
example, you might ask them to stay with the and family, from understanding professionals
person for an hour or go for a walk with them, or from a local support group where you can
so that you can get on with something else. chat to others who have had similar experiences
■ Make it clear that you value people’s support and who really understand what it is like.
and that just popping in for a chat or a regular
phone call to see how you are can make all the Congratulate yourself
difference You may sometimes feel that you have a
■ Explain to your family and close friends how thankless task. The person with dementia may
dementia can affect a person’s behaviour. no longer seem to appreciate your efforts and
Share the information you have with them. others may be unaware of just how much you do.
They will then be more able to understand the You need to pat yourself on the back from time
apparent contradictions in the behaviour of the to time:
person and just how much you have to do. ■ For managing to cope day in day out with
a very difficult situation
Your health ■ For becoming more flexible and tolerant and
See your GP on a regular basis to check up finding new strengths and skills which you did
on your own health and make sure they are not know you possessed
aware of any stresses and problems you are ■ For being there for someone who needs you.
experiencing:
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The NHS can be a major source of help for people Nurse consultants
with dementia and their carers – from chiropody Nurse consultants are highly trained and
to dentistry, physiotherapy to continence advice. specialised professionals. The Wakefield Memory
Finding out what services are available while the Clinic has a nurse consultant who specialises in
dementia is still at an early stage will save you the assesment and treatment of those persons
time when the need arises. exhibiting memory problems.
If Alzheimer’s disease has been diagnosed, It is important to try to find a dentist that
the consultant may decide to prescribe Aricept, you trust, someone who will continue to provide
Exelon or Reminyl. These drugs help maintain treatment as the dementia progresses and who
levels of an important chemical messenger in is prepared to visit your home or a residential
the brain acetylcholine. These drugs are not nursing home. NHS home visits are free but
a cure for Alzheimer’s but may halt symptoms the normal charges for treatment may apply,
in the early to middle stages of Alzheimer’s depending on income.
disease in the short term.
Continence Advisors
Community Mental Health Nurses (CMHN’s) A continence advisor can advise on problems
CMHN’s are mental health nurses who work associated with incontinence. They also give
in the community, supporting people with information on the use of aids, ranging from
mental health problems and their families. commodes to incontinence pads. Your local
CMHN’s carry out assessment of people in their continence advice centre is the Sir Jules Thorn
own homes and can advise carers and people Centre, Castleford and Normanton Hospital,
with dementia. They do not normally carry Lumley Street, Castleford. Tel: 01977 605516
out physical nursing tasks. The Memory Clinic has
dedicated CMHN’s who specialise in this area.
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5 Understanding and
respecting the person
with dementia
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If you are caring for a person with dementia you Treating the person as an adult
will want to ensure that they are always treated It is important that everyone continues
with respect and dignity. They are a unique and to treat the person as an adult and with
valuable human being. courtesy, however advanced his or her
dementia. Try to imagine how you would
Always remember that: like to be spoken to if you were in their shoes.
■ Each person with dementia is a unique ■ Be kind and reassuring without talking down
individual with their own very different to the person as though they were a child
experiences of life, their own needs and ■ Never talk across them or over their heads as if
feelings and their own likes and dislikes they were not there
■ Although there are symptoms of dementia ■ Do not talk about the person with other people
which are common to everyone, each person while the person is present. Always include
will be affected by their dementia in a them in the conversation
different way ■ Avoid scolding or criticising the person –
■ Everyone reacts to the experience of dementia this will make them feel small
in an individual way. The experience means ■ All these things will attack the fragile sense
different things to different people. of self-worth of the person
■ Look for the meaning behind words even if,
If you are caring for a person with dementia you on the surface, they do not seem to make much
will need to take into account their abilities, sense. The person is almost certainly trying to
interests and preferences. You need to be aware communicate with you about how they feel.
that these things may change as the dementia
progresses. You should be prepared to respond Focus on the remaining abilities
in a flexible and sensitive way. Avoid situations in which the person is bound
to fail since this can be humiliating. Look for
The life story of the person tasks they can still manage and activities they
The more background you give other can still enjoy.
people who are involved in the care of ■ Give them plenty of encouragement
the person, as well as their present situation, Let them do things at their own pace and in
the better it will be. This information will their own way
make it easier for other people to see the ■ Do things with the person, rather than for
person as a whole person rather than simply them, so that they can preserve some
as someone with dementia. independence
■ Break activities down into small steps so that
People involved in their care and support may they feel a sense of achievement, even if they
then feel more confident about finding topics can only manage part of a task
of conversation or suggesting activities that ■ Our self-respect is often bound up with the
the person may enjoy. way we look. Encourage the person to take
a pride in their appearance and give them
You may need to remind other people that: plenty of praise.
■ Dementia is nothing to be ashamed of. It is
no one’s fault. Respecting privacy
■ Dementia may cause the person to behave in Try to make sure that the person’s right to
ways that other people may find irritating or privacy is respected.
upsetting but that this is not deliberate ■ Suggest that people always knock on their
■ A person with dementia may often remember bedroom door before entering, for example
the distant past more clearly that the recent ■ If the person needs help with intimate personal
past and the present. They are often happy to activities, such as washing or using the toilet,
talk about their memories. But remember past this should be done in a sensitive way. Make
memories may be painful. sure the door of the bathroom or the toilet is
kept closed if other people are around.
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Offering choice
It is important that the person is informed
and whenever possible consulted about matters
that concern them. They should be given every
opportunity to make appropriate choices
■ Even if you are unsure how much the person
can understand, always explain what you are
doing and why. You may then be able to judge
their reaction from their expression and body
language
■ Although too many choices can be confusing
you can continue to offer choice by phrasing
questions that only need a ‘yes’ or ‘no’ answer,
such as ‘Would you like to wear your blue
jumper to-day?’ rather that ‘Which jumper
would you like to wear to-day?’
Expressing feelings
Dementia affects the thinking and reasoning part
of the brain and the memory. It does not mean
that the person no longer has feelings. A person
with dementia will probably be sad or upset at
times. They have the right to expect those caring
for them to try to understand how they feel, and
to make time to offer support rather than
ignoring them or ‘jollying’ them along.
Feeling valued
The person with dementia needs to feel respected
and valued for what they are now, as well as
for who they were in the past. It helps if those
caring are:
■ Flexible and tolerant
■ Can make time to listen and have a chat and
enjoy being with the person
■ Can show affection as appropriate.
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6 Activities
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7 Communication
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People with dementia should be encouraged face and the way they hold themselves and
to communicate in whatever way seems most move about can give clear signals about how
appropriate. This will help them to preserve they are feeling.
their own sense of identity and improve their
quality of life. Speaking
■ Speak clearly and calmly. Try not to speak
Language skills sharply or raise your voice. This will distress
A person with dementia maybe unable to find the other person, even if they are unable to
the right words – particularly names of objects. follow the sense of the words
They may substitute another incorrect word ■ Use simple, short sentences
or they may be unable to find a word at all. ■ The person will need longer than they used to
As the dementia progresses, they will be less able in order to process information – so allow
to start a conversation and the carer may have enough time. Try not to hurry them. If you do
to become accustomed to taking the initiative. they will feel that you are putting them under
pressure, even if it is not your intention
Try to avoid asking direct questions. In the early ■ Try to avoid asking direct questions. But if you
stages of dementia they will be able to express have to, ask the questions one at a time and
these feelings, but later on they may respond phrase them in a way that allows for a ‘yes’ or
with general irritation or even aggression. ‘no’ answer
■ People with dementia find if hard to make
Tips to help with communication choices and are likely to become confused and
Listening frustrated if they are asked to do so
■ Always try to listen carefully to what the ■ If the person does not understand what you are
person is saying and encourage them. At all saying, don’t keep repeating the same words.
costs, do not patronise them. Most of us react Try using an alternative format.
badly to being treated as if we were small
children – and people with dementia are no Encourage spontaneity
different in this respect ■ Humour can help to bring you closer together
■ If the person has difficulty in finding the right and is a good safety valve. Laughing together
word, or in finishing a sentence, ask them to about misunderstandings and mistakes can help
explain in a different way. Listen for clues ■ If the other person is feeling sad they have a
■ If speech has become hard to understand, use right to express these feelings. All you can do
the knowledge that you both have about each is show them that you care.
other to interpret what you think they may be
trying say. Always check back with them to see Showing respect
if you are right. It can be infuriating to have ■ Never speak down to the other person or treat
your sentence finished incorrectly by someone them as if they were a child, even if they
else. appear to understand very little of what you
say. Do not allow other people to do this either
Gaining attention ■ Try to include the person with dementia in
■ Try to catch and hold the attention of the conversations with others. You may find that
person before you start to communicate you can slightly alter the form of words other
■ Try to position yourself so that they can see people are using to help the conversation
you clearly along. Including people with dementia in
■ Make eye contact. This will help them to focus social groups helps to preserve their fragile
on you sense of their own identity. It also helps to
■ Try to minimise competing noises, such as the protect them from the feelings of exclusion
radio or TV or conversation of other people. and isolation, which can be overwhelming.
■ It is important not to converse across the
Body language person with dementia as if they were not
■ Try to remain calm and still while you are present. People with a variety of disabilities
speaking. This will convey the message that you complain of being treated this way.
are giving the person your full attention and
that you have time for them Keeping close
■ A person with dementia will read your body Affection can help to keep you close even
language. Agitated movements or a tense when conversation becomes more difficult.
expression on your face may upset them and You can communicate your care and affection
make communication more difficult by the tone in your voice and the touch of your
■ Try to find ways to relax so that your body hand. The reassurance you can give by holding
language communicates calmness and the person’s hand or putting your arm around
confidence them (if that is appropriate) should never be
■ You can pick up clues about the way the other underestimated. Here again we can see that
person is feeling from their body language, actions speak louder than words.
even if words fail them. The expression on their Page 18
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8 General Health
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Hearing ■ Keep feet clean and dry, and toenails cut short
Poor hearing can add to the person’s confusion ■ If the feet or any part of a foot becomes
and feelings of isolation. swollen or painful or there is a change in the
■ If you think the person has a hearing problem, colour of the skin, contact the GP as soon as
a GP can refer them for a free hearing test. possible
NHS hearing aids are also free ■ If there are problems such as corns or in
■ If they use a hearing aid make sure that it is growing toenails for example, consult a
switched on and working properly. As the state registered chiropodist.
dementia progresses the person may find that
the hearing aid is too difficult to manage and Exercise
this simply adds to the confusion Regular exercise is good for the health of us all
■ You may need to attract the attention of the including a person with dementia
person before speaking to them. A touch on ■ It will enable them to remain mobile and
the arm will indicate where you are. Face them therefore independent for as long as possible
so that they can see you, then speak slowly and ■ It will improve circulation and help to prevent
clearly. If they do not understand you, try to stiffness and muscle wasting
alter the form of words you are using rather ■ It will help the person to feel better and to
than repeating the same phrase more loudly. sleep better
Make sure that there is no distracting noise ■ It can help to reduce anxiety, stress and
such as television, radio or loud voices. depression.
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Well-being
Feelings of well-being are an important aspect
of good health. The person with dementia needs
■ Affection and reassurance from you that they
are still valued and that they do matter to you
■ Freedom from as much outside stress as
possible
■ Appropriate activities and stimulation to enable
them to remain alert and motivated for as long
as possible.
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9 Living alone
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If a person with dementia is living on their Ensure that helpful information is accessible
own, there are likely to be some concerns A notice board with helpful telephone numbers
about their ability to cope, especially as their (including emergency numbers) on it may be
dementia progresses. Where possible, the person useful for the person with dementia in the early
with dementia, their friends and family members stages, as well as for relatives or professionals
and experienced professionals should discuss visiting the home. The notice board could
these concerns together. also provide information such as the location
of the stopcock, gas and electricity meters
Much can be done to enable someone with and the first aid box.
dementia to remain in their own home, even
when their dementia is quite advanced. A week at a time diary, containing details
about who is visiting and when can also
Familiar surroundings and routines can be be helpful and reassuring for the person.
reassuring for people who are confused.
Many people with dementia are happier if they Help with managing finances
can live in their own home for as long as possible. It can help if all regular household bills are
Some people’s dementia progresses quite quickly paid by direct debit. If this is not possible,
once the person moves, whether to live with or the person prefers to pay their own bills,
a family member or to enter a care home. the relevant gas and electricity and water
companies should be informed, so that the
A person with dementia will need increased supply is not suddenly cut off.
support as their dementia progresses. Get in
touch with the appropriate services at an early If the person with dementia does not want
stage. Do not wait until a crisis develops. to pay for outside care, or forgets to do so,
payments can usually be made on their behalf.
What can friends and family do?
It is common for one member of the family Anyone handling money for the person
to assume responsibility for the person with with dementia should keep a careful account
dementia as the main carer, and for others of what is spent to avoid any potential problems
to be unaware of the stress that this can cause. later. Family members may want to know where
It is particularly exhausting when the main carer the money is going, the person with dementia
has other commitments and feels pulled in may also forget what has been arranged and,
different directions. in some cases, even become concerned that
people are stealing from them. The Alzheimer’s
The main carer should make it clear that Society can provide you with more information
they need regular support. They are entitled regarding the handling of money if you
to a life of their own and they will not be able require it.
to help anyone if they wear themselves out.
Outside help
It is usually easier for others to contribute to People with dementia do not always
care if they are involved from the start. It can realise when they need help. Some people
be a good idea to hold a family meeting at an find it more helpful if a carer takes them
early stage to work out what each member out while someone else cleans their home.
of the family can realistically offer, now and
in the future. This may help avoid later feelings The person should be receiving all
of resentment or guilt. Support might range the benefits to which they are entitled.
from regular visits or help with practical tasks, Disability Living Allowance or Attendance
such as shopping, to financial help with care Allowance is awarded in order to pay for
services if the person lives too far away to extra care.
help directly themselves.
Carers should be aware that they may
Tell other people be criticised by the person with dementia
Friends and family can explain the person’s and that their attempts to help may be
dementia to friends, neighbours local sometimes ignored. Although this can be
shopkeepers and anyone else whom the person hurtful, it should not be taken personally.
has regular contact. These people may have The person with dementia may not always
time to chat, offer assistance in various ways understand or remember everything that
or help the person if they ‘wander’ away from is being done for them.
the house and forget their way home.
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Home workers
Home workers or care attendants can help
with personal care. The frequency of visits
can vary depending on the person’s needs
They can help by:
■ Supporting the person getting up
■ Washing
■ Dressing
■ Using the toilet
■ Doing laundry
■ Supervising meals
■ Helping to bed at night
Domestic help
Help with tasks such as shopping or
housework can be arranged through
Social Services. If help is arranged
privately then references must be
checked and candidates interviewed
to ensure that they are suitable and
understand dementia. You should
still inform Social Services if you
decide to employ someone privately.
Day Care
Social Services can arrange day care
at a local day care centre. Day centres
can provide company and activities.
They often provide other facilities such
as hairdressing, chiropody and bathing.
Transport to and from days care can
be arranged.
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