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Designing and Distribution of Dementia Resource Book to Augment the Capacities of Their Caretakers

  • Avani ManiarEmail author
  • Khyati Deesawala
Living reference work entry

Abstract

As per the estimates of the WHO, aging population is increasing in developing countries, and dementia is going to be epidemic among elderly in the coming decades. This demands early action to prevent the disease and treatment of the affected persons, which is poorly existed in middle- and low-income countries.

The need of the hour to tackle dementia in India is to estimate the disease burden in the community, search for risk and protective factors, and undertake measures to provide social benefits to the sufferers and those who are at risk. Raising awareness among the civil society is an important task ahead. Apart from that, family members and caregivers of dementia sufferers have to be very sensitive and resourceful while handling them. If they are well equipped to deal with the issue, positive results can be seen in their efforts.

Without proper information about dementia, the person and the family may respond in different ways which may aggravate the problems in dealing with dementia patients. Hence, to prepare family members and caregivers of dementia sufferers, a resource book in simple, nonmedical language with a lot of illustrations and variety of information is designed to help them and gain support for various issues while dealing with the patients.

The book chapter discusses the need for designing the resource book, the approach adopted while selecting and designing the book, and also the communication strategies used in distributing the resource book among its caretakers.

Keywords

Dementia Resource book Caretakers Leaflet Awareness Old age Capacity building 

Introduction

The World Health Organization (1999) recognized that the developing world often defines an old age not by years but by new roles, loss of previous roles, or inability to make an active contribution to society. The age of 60 or 65, roughly equivalent to retirement ages in most developed countries, is said to be the beginning of old age. The WHO predicts that by the year 2025, about 75% of the estimated 1.2 billion people aged 60 years and older will reside in developing countries.

https://www.scribd.com/document/190077600/WHO-Definition-of-an-Older-or-Elderly-Person

The aging of the society comes along with several specific problems, i.e., physical and mental problems. The top five causes of death among older adults are heart disease, cancer, osteoporosis, cerebrovascular disease (relating to the blood vessels that supply the brain), pneumonia and flu, and chronic obstructive pulmonary disease. Hearing impairment among older adults is often moderate or mild, yet it is widespread; 48 percent of men and 37 percent of women over age 75 experience hearing difficulties. Visual changes among aging adults include problems with reading speed, seeing in dim light, reading the small print, and locating objects. By age 80, it’s common to have lost as much as 2 inches (5 cm) in height. This is often related to normal changes in posture and compression of joints, spinal bones, and spinal discs. With age, the skin becomes less elastic and more lined and wrinkled (Brock 2014).

(http://hemispherespublishing.com/social-security-qualitative/)

He further mentioned that for most of the older adults, good health ensures independence, security, and productivity as they age. Yet millions struggle everyday with emotional and psychological stress closely related to loneliness, isolation, or loss of a loved one, along with emotional problems. Elderly also go through health and safety challenges such as chronic disease, dementia/Alzheimer’s disease, diabetes, Parkinson’s disease, and much more, and at times these dilemmas are not taken into account by the medical or healthcare system.

Das et al. (2012) while analyzing dementia scenario in India described about the number of people who may be affected by it. It is estimated that the number of people living with dementia will almost double every 20 years to 42.3 million in the year 2020 and 81.1 million in the year 2040. The rate of growth will be the highest around 336% in India, China, South Asia, and Western Pacific regions and 235–393% in Latin America and Africa and the lowest (100%) in developed regions. Based on the year 2001 global population, about 24.3 million have dementia, and 4.6 million incidents or new cases are added yearly.

As per global burden of disease study by WHO and World Bank, dementia contributes 4.1% of all disability-adjusted life years (DALYs). According to the Alzheimer’s and Related Disorders Society of India (2010), in India, the number of people with the AD and other dementias is increasing every year because of the steady growth in the older population and stable increment in life expectancy. Thus, an estimated twofold increase by 2030 and threefold by 2050 can be expected. According to the Neurological Society of India, It is expected that the burden of dementia will be increasing in developing countries due to increase in longevity and increasing prevalence of risk factors such as hypertension and stroke and lifestyle changes.

http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2012;volume=60;issue=6;spage=618;epage=624;aulast=Das

What Is Dementia?

According to Alzheimer’s society, the word dementia is defined as a set of symptoms that may include memory loss and difficulties with thinking, problem-solving, or language. These changes are often small to start with, but for someone with dementia, they become severe enough to affect their daily life. A person with dementia may also experience changes in their mood or behavior.

The people affected by dementia become easily confused and restless and perform repetitive actions. The patients can become irritable, agitated, and tearful. This scenario is stressing for both the patient and their family. Because of the frustration the patients feel about their condition, they can also develop depression and aggression and show improper sexual behavior and incontinence at times.

There is 1 out of 20 people over the age of 65 who can develop dementia. When the elderly are over the age of 85, there is a higher risk of developing dementia: one out of four elderly can develop the disorder. People who have been diagnosed with dementia before the age of 65 are very rare cases. This type of dementia is called presenile or early onset dementia as mentioned on a mental health information website of Hamlet Trust, UK (www.hamlet-trust.org.uk/articles/dementia.html).

What Are Signs and Symptoms of Dementia?

WHO factsheet (2017) highlighted that problems linked to dementia can be best understood in three stages:
  • Early stage – in first year or 2 years of its onset

  • Middle stage – during second to fourth or fifth year of its suffering

  • Late stage – in its fifth year and after

Early Stage

The early stage is often overlooked. Relatives and friends (and sometimes professionals as well) see it as “old age,” just a normal part of the aging process.

The onset of the disease is gradual and difficult to recognize.
  • Have problems in talking properly (language problems)

  • Have some memory loss, particularly of recent events

  • Have difficulty in making decisions

  • Become inactive and unmotivated; show mood changes, depression, or anxiety; and may react angrily or aggressively

  • Show a loss of interest in hobbies and activities

Middle Stage

As the disease progresses, limitations become pronounced and more restricting.

The person with dementia has difficulty with day-to-day living.
  • May become very forgetful – especially of recent events and people’s names

  • May become extremely dependent on their family and caretaker; unable to cook, clean, or shop; needs help with personal hygiene

  • Have wandering and other behavior problems such as repeated questioning and calling out, clinging, and disturbed sleep

  • Unable to recognize familiar and unfamiliar places at home or outside

  • May have hallucinations (seeing or hearing things which are not really there)

Late Stage

This stage is one of near-total dependence (confined to a wheelchair or bed). Memory disturbances are very serious with more physical complications. The person may:
  • Have difficulty eating and walking and be incapable of communicating

  • Not recognize relatives, friends, and familiar objects

  • Have bladder and bowel incontinence, breathing difficulties, and respiratory infections.

http://www.who.int/mediacentre/factsheets/fs362/en/#Factsheets

Below snapshots (Figs. 1 and 2) are from the Reference Book depicting the signs and symptoms of dementia and also what the affected patient feels like.
Fig. 1

Signs and symptoms of dementia

Fig. 2

How does a dementia patient feel?

What Are Causes of Dementia?

Alzheimer’s Society (2007) elaborated about the causes of dementia. It is caused by damage to brain cells. When the brain cells are damaged and become nonfunctional, thinking, behavior, and feelings get affected. The human brain is divided into regions, and each region is responsible for different functions associated with the body. For example, one region controls memory; another is responsible for psychomotor controls and still another for judgement.

Different types of dementia causes are associated with particular type of brain cell damage in particular regions of the brain; some of the causes are simpler to understand in terms of how they affect the brain and lead to dementia:
  1. A.

    Alzheimer’s disease – This is the most common cause of dementia. High level of certain proteins inside and outside brain cells makes it hard for brain cells to stay healthy and to communicate with each other in the brain region called the hippocampus. This region is concerned with memory and learning; hence, the problems with day-to-day memory are often noticed first, but other symptoms may include difficulties with finding the right words, solving problems, making decisions, or perceiving things.

     
  2. B.

    Vascular dementia – If the oxygen supply to the brain is reduced because of narrowing or blockage of blood vessels, some brain cells become damaged or die. This causes vascular dementia. The symptoms of vascular dementia vary and may overlap with those of Alzheimer’s disease. Many people have difficulties with problem-solving or planning, thinking quickly, and concentrating.

     
  3. C.

    Mixed dementia – This is when someone has more than one type of dementia and a mixture of symptoms. It is common for someone to have Alzheimer’s disease and vascular dementia together.

     
  4. D.

    Dementia with the Lewy bodies – This type of dementia involves tiny abnormal structures (Lewy bodies) developing inside brain cells. They disrupt the brain’s chemistry and lead to the death of brain cells. Early symptoms can include fluctuating alertness, difficulties with judging distances, and hallucinations.

     
  5. E.
    Frontotemporal dementia (including Pick’s disease) – In frontotemporal dementia, the front and side parts of the brain are damaged. Clumps of abnormal proteins form inside brain cells, causing them to die. At first, changes in personality and behavior may be the most obvious signs. Depending on which areas of the brain are damaged, the person may have difficulties with fluent speech or forget the meaning of words (Fig. 3).
    Fig. 3

    Estimated figure showing causes of dementia

     

https://www.alzheimers.org.uk/info/20007/types_of_dementia/1/what_is_dementia/3

How Can Dementia Be Treated?

According to Alzheimer’s Society (2007), the vast majority of causes of dementia cannot be cured, although research is continuing into developing drugs, vaccines, and other medical treatments. There is also a lot that can be done to enable someone with dementia to live well with the condition. Care and support should be “person-centered,” valuing the person as a unique individual. Therefore, the two types of treatments are:

Non-drug Treatments and Support

A range of support, therapies, and activities that do not require medication can help someone to live well with dementia. Talking therapies such as counseling can help someone come to terms with their diagnosis. Another treatment called cognitive behavioral therapy (CBT) may be offered to help with depression or anxiety. There is also a lot that can be done at home to help someone with dementia, remain independent, and live well with the memory loss. Support ranges from devices such as pill boxes or calendar clocks to practical tips on how to develop routines or break tasks into simpler steps.

Activities that help to keep the mind active, such as cognitive stimulation, are popular. As the condition progresses, many people with dementia enjoy life story work (in which the person is encouraged to share their life experiences and memories). Such activities may help improve someone’s mental abilities, mood, and well-being.

It is vital that people with dementia stay as active as they can – physically, mentally, and socially. Everyone needs meaningful activities that they enjoy doing and which can develop confidence and self-esteem.

Drug Treatments

There are drugs that can help to improve the symptoms of dementia or that, in some cases, may stop them progressing for a while. A person with mild to moderate Alzheimer’s disease or mixed dementia may be prescribed donepezil (often known by the brand name Aricept), rivastigmine (e.g., Exelon), or galantamine (e.g., Reminyl). These may temporarily relieve memory problems and improve alertness. Donepezil, rivastigmine, and galantamine can be helpful for someone with dementia with Lewy bodies who has distressing hallucinations or delusions or who has behaviors that challenge. For a person with vascular dementia, drugs will be offered to treat the underlying conditions. These conditions often include high blood pressure, high cholesterol, diabetes, or heart problems. Controlling these may help slow the progression of dementia.

A person suffering from dementia needs a lot of care to deal with the disease, as the person suffers from many problems and that leads to person’s deteriorating stage physically and mentally, so to help the person struggling from physical and mental problems, the patient needs the care to be provided by the caregivers and families and to avail of the available services and awareness provided to them. Thus, there are certain caretaking services in India which can serve the patients to live a better life.

https://www.alzheimers.org.uk/info/20007/types_of_dementia/1/what_is_dementia/7

The following snapshots (Figs. 4, 5, and 6) from the resource book talk about the details of the doctors available for dementia patients and also some tips on nutrition needed for dementia patients along with the prevention measures.
Fig. 4

Names of doctors for dementia patients

Fig. 5

Nutritional tips for dementia patients

Fig. 6

Prevention of dementia

Which Dementia Care Services Are Available in India?

Alzheimer’s and Related Disorders Society of India (ARDSI) is actively involved in developing services for dementia across the country. Healthcare organizations like HelpAge India, Dignity Foundation, Nightingales Trust, the Dementia Society of Goa, Sangath, Silver Innings Foundation, Christian Medical College, Vellore, St. John’s Medical College, Bangalore, and Voluntary Health Services, Chennai are also providing care services either alone or in collaboration.

To overcome the limited information about dementia services in the country, ARDSI made an effort to map the dementia services available in India by contacting all chapters and other partners in the country. The services available in the country that cater exclusively to the people with dementia are provided in Table 1. There are half a dozen residential care facilities exclusively for people with dementia. The available services are grossly inadequate to meet the needs of the over 3.7 million PwD (people with dementia) in India.
Table 1

Services exclusively for people with dementia in India

Name

Type of service

Approximate number of such facilities in India

Residential care facilities

This facility is suited for those families who find it difficult to manage the basic day-to-day activities of the PwD. They could opt for long-term care in a nursing home facility. This also includes respite services where the PwD is looked after for a short period to give the caretaker a break

6

Day care Centers

Dementia day care facilities are designed for those PwD who have a need for medical attention and supervision but who do not require institutionalization in a nursing home. In these facilities, the PwD are looked after during the day after which they return home

10

Domiciliary care services

The services are provided to the PwD at their residence. Services could range from education to providing tips on caregiving to actual formal care. Could be provided by geriatric home nurses or other trained personnel. There is evidence that nonspecialist community workers can also be engaged in providing this service

 

Support groups

Support groups are groups of people who have lived through the same difficult experiences and try to help themselves and others by sharing coping strategies. Recommended for caretakers of PwD

Exact data not available

Memory clinics

Memory clinics are specialized clinics that offer assessment, support, information, and advice to those with memory problems and their caretakers

100

Dementia help lines

These are special phone numbers dedicated to addressing queries on dementia. The calls are handled by trained personnel

10

(Alzheimer’s and Related Disorders Society of India 2010 report)

Dementia remains a largely hidden problem in India, especially in those parts of India where poverty and illiteracy levels are high. There is a growing realization that the care of older people with disabilities makes enormous demands on their caregivers. Seeing the increased prevalence of dementia in India among elderly and lack of facilities for the treatment of the diseases, terms like dementia and Alzheimer’s should be more emphasized by creating awareness among the families, caregivers, policymakers, and civil society in general. It is forecasted that in years to come, there will be a number of seniors who will be affected and hence the society should be aware of dealing with such issues. Level of awareness varies enormously across countries and even within countries. The public awareness about dementia in India is low. Primary care doctors do not encounter many cases in their practice, and there is no special emphasis on dementia diagnosis and management in the training of healthcare professionals.

How Can Designing a Resource Book on Dementia Be Helpful?

Lack of awareness has serious consequences for PwD (people with dementia). Their families do not understand dementia as a health problem. Hence, dementia is not recognized at its onset, and the diagnosis is often delayed due to lack of awareness of the disease. There is no structured training on the recognition and management of dementia at any level of health service. Healthcare services remain insensitive too and do not provide the much-needed information and support for caretakers and family members. While family members are the main caretakers, they must do so with little support or understanding from other individuals/agencies or information sources available at their doorstep.

Media interest in dementia and related healthcare issues also remain low. The information covered by mass media is not enough quantity- or quality-wise. For example, an article in the newspaper may not cover the type of information a reader is looking for or one may not read the newspaper on the day article/news is published or the reader may not understand the language used in the article. Similarly, TV or radio ads are being played in few seconds and social messages are telecasted/broadcasted, which may not be enough to cover the important information on the subject. Interviews or other formats are covered rarely in such electronic media. Online free resources are available in abundance for its users. They are in variety of formats which helps the Internet users to be aware of updated information through its web sources. WHO and other professional agencies and organizations working in this area keep sharing and uploading information on dementia. Majority of these websites are hosted by the developed countries which is not completely adoptable by Indian citizens. India is a country of diversity, and people in India are in a transition phase, moving from traditionalism to modernization. Therefore, their thinking, actions, and behaviors are a mixed of traditionalism and modernism; likewise their media accessibility and usage pattern include both traditionalism and modernism and are not transformed completely to modernism yet. The researches in media studies, Media Yearbook, and other reports on communication for social change reveal about multimedia strategy as an effective form of imparting and disseminating information to masses. Hence, looking to the advantages of a printed book, availability of the updated online resources, and the intended target group (mainly adults/elderly), a resource book will be of great help which includes a number of links to the online sources.

For augmenting the capacities of caretakers/family members of people with dementia, this resource book is brought into light. It helped the targeted users to get the updated information which is there on videos, podcasts, films, books, and mobile apps. From this one resource book, they were given all the details about doctors whom they can consult with and list of helpline numbers and care centers and also organizations for dementia patients.

How Was the Resource Book Designed, Distributed, and Checked for its Effectiveness?

The designed resource book is targeted to create awareness regarding dementia (which included causes, symptoms, treatment, food, daily activities, etc.), among dementia patients, caregivers, and their family members. The language used in the book to explain about this complex disease is simple and with lots of illustrations. It has colorful visuals to sustain reader’s interest in the subject and information provided. When family members of the person with dementia refer and consult medical doctors/general practitioners for issues they face in caring and handling, medical doctors/general practitioners often fail to make them understand their level of comprehension. They often fail to give effective guidance related to the type of food the patients should be receiving. The families of people with dementia are often with half/incomplete or less information about the disease which results in providing improper care services. The condition of the patient in such cases turns bad to worse, which is a cause of great concern for all in the health profession.

Approach Used in Designing the Resource Book

After an extensive reference work to interpolate all the details about dementia which a caretaker/family members would look forward to a resource book, the team referred books, viewed videos, read real stories of dementia sufferers, and surfed games and mobile apps useful for them and their caretakers. The interactions with the affected families revealed that the families with dementia patients look for organizations, doctors, and helpline numbers to deal in emergency situations. The team collected a number of such need-based information for compiling it in a systematic manner. Informative cartoons, quotes, and poems on dementia were also collected to make the resource book attractive, interesting, and informative for a reader from nonmedical background to understand the complexities which dementia patient faces. This approach is a big hit as it is always a challenge for health communicators to explain the medical issues to nonmedical personnel in a way which is comprehensible.

Discussions with practicing doctors, Medical College professors, social workers, researchers, and development/extension communicators helped immensely in gathering the details about dementia and the topics to be covered for the resource book. The team referred other resource books on dementia compiled in other countries other than India. The following topics were selected after few months of brainstorming with experts, families with dementia patients, and observations by team:
  1. 1.

    Introduction about dementia – About dementia, signs and symptoms, prevention, treatment, and causes

     
  2. 2.

    Self-check test for dementia

     
  3. 3.

    Facilities and services for dementia patients – List of doctors treating dementia patients, organizations working for dementia patients, and helpline numbers for emergencies

     
  4. 4.

    Role of a caretaker – Roles and responsibilities while taking care of dementia patients

     
  5. 5.

    Tips for family members and caretaker – includes the type of behavior they should maintain with the patient and the type of activities which can be given to dementia patient for cognitive stimulation

     
  6. 6.

    Nutritional tips highlighting the importance of nutrition in the resource book to make the readers aware of the kind of food to be given to dementia patients

     
  7. 7.

    Gears for dementia patients talks about the variety of equipment’s which can be used for patients with dementia

     
  8. 8.

    Other resources which can be very useful for dementia patients like games, mobile apps, books, films, videos, and a podcast which may be helpful to cope with symptoms of dementia and how to deal with it in a correct way. The team identified the most relevant videos available on YouTube and other web portals, and their web links were shared in the resource book. Likewise, similar approach was adopted for podcasts, films, and mobile apps.

     

The team progressed to the next level to organize the collected/identified details under the relevant topic heads as separate chapters by creating an index. The textual material went hand-in-hand with an illustration for better visual learning. The content in its simplest form with creative animated pictures and quotes on old age mentioned at the bottom of the page gave additional information to its readers to learn about the old age and dementia, thereby making the resource book interesting and attractive.

Designing of a Leaflet

With a purpose to publicize the resource book, a leaflet was designed. The text of the leaflet highlighted the resource book and its objective behind designing. It also mentioned briefly about the content of the resource book and the email IDs of team members who can be approached for availing the copy of it.

Validation of the Resource Book

The designed resource book underwent a thorough review with five experts to check the content, designing aspects, the color of the fonts, suitability of subtitles, and coordination of pictures along with the text, also the logical validity of the content and clarity of the language. The experts were professors in Medical College, practicing doctors, philanthropist working for elderly, and development communicators/media designers.

The team incorporated the suggestions received from the experts for improving the content of the resource book. The resource book received high appreciations with very positive and supportive words as this is a much-needed work in this field. The style/approach of presenting the content, compiling the information and the usage of visuals and images in the resource book, impressed the reviewers highly. Post validation, the resource book was all set for printing and distribution.

Budget for Printing the Resource Book

The budget/sponsorship basically was needed for the cost that incurs in designing, printing, and binding of the 50 hard copies of the resource book. The team approached a few philanthropists from Vadodara City, CSR-based NGOs working in the health sector, with the resource book as a project proposal for sponsorship. “Bhumi Procon Private Ltd” Vadodara sponsored for the printing budget of this project with an amount of Rs. 35,000. The team planned to distribute 50 hard copies to those who have genuine issues in accessing it in the form of soft copies; otherwise soft copies through email would be distributed. This strategy worked well with a limited budget; however, if more copies are printed, then a large number of the population who is more comfortable reading the print form would be benefitted.

The Resource Book Distribution Approach

Once the resource book is compiled, the intended target group should be made aware about its availability and the benefits. To achieve this, the team publicized it in one of the regional newspapers Gujarat Samachar which has wide circulation in the city of Vadodara as well as in the State of Gujarat, India. When the editor of the newspaper was approached, he showed interest in publishing about the resource book. The article described the widespread prevalence of dementia, the problems the dementia patients go through, and how to cope and deal with such patients. The article mentioned that the resource book is designed for such sufferers and their caretakers/family members. Topics covered in the resource book were mentioned in the article, and those interested and in need of the book will be given the resource book free of charge. The email IDs of the team members were mentioned in the article to avail the soft copies.

Leaflet was an another source for publicizing about the resource book, which was distributed to the members of senior citizen clubs – as it houses a large number of senior citizens as life members. The team conducted a presentation to create awareness about dementia in those clubs by announcing the dates of the presentation well in advance. It was to ensure that all the members participate and benefit from the presentation. A large number of members were addressed, and at the end of the session, leaflets were distributed to each one of them.

The published article in the newspaper had a surprising impact; in other words, an overwhelming response was received on the email IDs of the team members mentioned in the newspaper and the leaflet. Also, some really interesting incidents happened as follows. On the day the article was published in the newspaper, a person visited the office of the team members to get the resource book telling how keen he was to own a copy. Fifteen phone calls were received demanding for the copy, though phone contact details were not shared either in the newspaper article or in the leaflet. A letter demanding for a copy was received for the same. It revealed their keenness to read the book. The team announced a cutoff date for sending in the requests for the copies, and they received 146 emails till the cutoff date, out of which large number had asked for hard copies. Reply to 50 of them was sent mentioning the dates, time, and venue to collect their copy. Others were sent with the soft copy. Along with copies (hard and soft), the team also distributed feedback form. A record of the people who came to collect the resource book was maintained wherein their name, address, contact number, email ID, numbers of copies taken by them, and reason for taking the resource book were jotted down for future reference.

Reactions to the Resource Book from Its Readers

There are a number of models used in designing a communication strategy for the development projects and programs to achieve the objective of advocacy, social mobilization, or behavior change among the target group. The three commonly used models are ACADA (Assessment, Communication Analysis, Design, and Action) which uses systematically gathered data to link a communication strategy to the development problem, the P-Process for planning strategic, evidence-based communication programs, and COMBI model that emphasizes on ten steps which may not be followed in a linear fashion; steps are often repeated. All three models considered evaluation, evaluation and replanting, and impact assessment as an integral components of the model.

(https://www.unicef.org/cbsc/files/Writing_a_Comm_Strategy_for_Dev_Progs.pdf)

It is indeed very important to know if the objective of designing this resource book was achieved or not, was it interesting for the readers, did it give them enough information about dementia, and did the content help them in dealing with the issues. To achieve this, the team members conducted evaluation to get the reaction/feedback from the target group on the resource book.

Tool for Collecting Reactions

The reaction scale had series of questions with multiple-choice response system, few are open-ended, and few are checklist types. It consists of three sections, and questions are asked as per the title of the sections which is as follows:
  • Section 1: Personal Details – This section consists of questions related to personal details of the respondents like their age; contact details; type of respondent they were like patient, caretaker, or a family member; sources of information about dementia; sources to know about the present resource book; type of problems faced by the respondents; and few other questions to get the basic information about the respondents. The section includes open-ended and multiple-choice questions.

  • Section 2: Feedback About the Resource Book – This section housed questions related to the feedback for the resource book to understand the usefulness of the content in the situation they are in. Did they change their diet pattern and view videos and films to know further details about dementia? Was the presentation of the information with visuals and colors interesting and easy to comprehend? All the questions were to know the worthiness of designing such a resource book. The section included both checklist and multiple-choice questions.

  • Section 3: Suggestions – This section contains questions to gather their suggestions for creating awareness about dementia, suggestions of adding more information to the resource book, and whether the information provided was latest and updated. Open-ended- and multiple-choice-based questions were framed to seek the responses.

Procedure of Data Collection

The team distributed the reaction scale along with the hard and soft copy, and the returning date of the reaction scale was mentioned on the covering letter. Beneficiaries were given enough time to read the book and follow the links for videos and films to watch. Twenty of them sent the filled-in reaction scale on the date mentioned. The team analyzed the data based on the responses provided by them. The contents of the emails received made it very clear that the resource book was referred by dementia patients, family members/caregivers, senior citizens, and young people who wanted to be aware of the disease. The senior citizen clubs went ahead one step and requested for a copy to keep it in their library for its members for future reference.

Reactions/Responses of the Readers

The team noted that the 20 respondents who filled in the reaction scale were among these three: the family members of the patients, the dementia patients themselves, and their caretakers; however, majority of them were the family members of the dementia patients. The team went through the reactions/feedbacks thoroughly and charted out the below observations.
  • Majority (60%) of the patients were suffering from dementia since last 1–2 years, little more than one-tenth percent (13.3%) of the patients were suffering from dementia since last 3–4 years, whereas, very less (6.6%) of the patients were suffering from dementia since last 10 years

  • Little less than a half percent of the respondents got to know about the disease dementia through newspaper/magazine, while 35% of the respondents got the information from doctors and one-tenth (10%) of the respondents got the information through neighbors and friends.

  • A very high majority (90%) of the respondents got to know about the “resource book on dementia” through the newspaper and one-tenth of the respondents by word of mouth.

  • The majority (65%) of the respondents were interested in having the resource book for their own self/family member/friend/relative who had the symptoms of forgetfulness, and also they were interested in acquiring additional knowledge to whatever they already knew about dementia. While many of them were interested in having the resource book since they were aging and felt the necessity to self-educate themselves about it, 40% of the respondents were interested in having the resource book because they can be more skilled and effective in treating the patient. Few reported that the cause is widespread; hence, they want to help the society by being a well-informed citizen.

  • The following are what the respondents say about the type of problems they face while dealing with the dementia patients:
    • Unable to understand what she is going through and does not express anything.

    • Does not want to talk, sulks down when walking, forgets taking medicine, and forgets that he had meals.

    • Trying to make the patient remember one thing with many trials and lots of efforts and then still when the result is not fruitful, it is the main problem

    • Forgets road directions at night, date, days, names, things, the name of people, childhood events, etc.

    • She keeps on repeating same sentences again and again and forgets what she spoke for 5 min.

    • She does not understand the daily routine.

    • She remains absent-minded, doesn’t do any work (we force her to eat), does not remember most of the things from past, keeps crying, cannot control her urine, etc. She was missing from home for 24 h; we had to find her through the newspaper.

    • I have trouble in remembering events that happened in the past.

    • My mother is very hyper at times, to the event that she hits the caretaker.

  • A high majority (70%) of the respondents found that the information about dementia (signs and symptoms, causes, prevention, treatment), the chapter on the role of caretaker, were the most useful details for them in the resource book.

  • A very high majority (75%) of the respondents found the list of books and poem useful, while 70% of the respondents found information related to podcast useful.

  • The majority (65%) of the respondents found self-check test most useful, and equal percentage found information about organizations useful, whereas 60% of the respondents found games for dementia patients and mobile apps useful. More than half percent (55%) of the respondents found the name of doctors and helpline numbers most useful, whereas the same percentage of the respondents found nutritional tips useful.

  • Less than half percent (45%) of the respondents made a change in the diet of patient’s food, whereas thirty percent (30%) didn’t make any change in the diet of patient’s food after reading the resource book.

  • Half of the respondents had viewed the video (suggested links in the resource book).

  • A high majority (80%) of the respondents could relate their own experiences with real-life stories and experiences mentioned in the resource book

  • A very high majority (90%) of the respondents liked the language used (simple to understand for amateur); high majority (80%) of the respondents liked the colorful presentation and list (doctors, organizations, helpline numbers) provided in the resource book, whereas majority (75%) of the respondents liked the written matter.

  • All the respondents agreed that the pictures were relevant to the content and size of the fonts was appropriate. And all the respondents were interested in reading the resource book on dementia

  • A high majority of the respondents felt that the training program should be organized for caretakers and family members of dementia patients. More than half percent of the respondents felt that lectures should be organized, helpline number on 24-h basis should be started, and 35% of the respondents felt that special geriatric wards should be opened.

  • All the respondents felt updated about dementia-related information after going through this resource book.

Details on some of the topics which were highly appreciated by the readers such as tips for family members and the caretakers, videos for better understanding and caretaking, and podcasts for the engagement of dementia patients are depicted in the below snapshots (Figs. 7, 8, and 9) from the resource book.
Fig. 7

Tips for family and caretaker

Fig. 8

Videos

Fig. 9

Podcast

What Did the Readers Suggest?

  • Interviews with the patients’ relatives should be recorded.

  • The resource book should be put on a website (If no website exists, create one).

  • Finding out primary causes of dementia, e.g., due to tension, and how can it be detected and cured at an early stage.

  • A separate chapter on yoga and light exercise for keeping fit physically should be added to the resource book.

Suggestions for Future Work in Promoting Awareness About Dementia

  • Seminars should be conducted on dementia for family members, caregivers, and patients suffering at an early stage.

  • Helpline numbers of dementia care centers should be publicized through media.

  • Lectures should be organized along with the resource book and other materials helpful in coping with different situations that occur in dealing with the patients.

  • More resource books with different ideas or any other references related to dementia should be published to help the patients and their caretakers.

  • The resource book or any other reference made should be shared on the website. If no website is available, then one should be created, and required details on dementia should be housed on that website.

Conclusion

The idea of this kind of initiatives is to augment the capacities of caretakers/family members of dementia patients by designing and distributing the resource book among them so that they understand the patients better with utmost care and concern. The resource book covers a large amount of information on dementia as a disease, facilities and services available for them in the city as well as at the national level for accessing it during critical situations, list of games for cognitive stimulation, and mobile apps for ease in accessing information and help anytime. Details such as list of books, films, videos, podcasts, and real stories and experiences of dementia patients were also covered in this book for its readers. As the team adopted the strategy of analyzing the needs and characteristics of the targeted group, it turned out in designing the content appealing to the nonmedical readers. Simple and effective messages through quotes and informative cartoons helped in passing on the thoughts effectively.

While designing the resource material for a targeted group, it is always a best idea to give personal visits to the families and the caretakers to observe and understand what they really need and how can they be helped and guided accordingly with the much needed information through the resource material and the team working on the above-discussed project followed the same strategy, this strategy helped tremendously to design an apt resource book for the family members and the caretakers.

The team used a varied set of communication media to achieve the objectives of reaching out to the intended target group and to pass on the information effectively. The newspaper article and the leaflets publicized the resource book among the residents of Vadodara City and the State of Gujarat. The medium of Internet delivered the soft copies of the resource book to the family members and the caretakers irrespective of how far they resided. The team shared the email IDs through the media for effective and easy reception of the soft copies or the reaction scale for the interested parties.

The sponsorship received from the philanthropists for printing of the resource book was of great help as it helped in reaching out to the targeted group with the desired content in the right form. The CSR-based NGOs or voluntary organizations working in the sector always financially support for these kinds of projects which involve creating of awareness among the masses for the larger benefit of the society.

To cover it in a nutshell, this resource book is a big win and is highly appreciated among the researchers from gerontology discipline and development communicators working for bringing social and behavioral change in the society – for the approach adopted in designing the content, the communication strategy for distribution of the book, and on the whole as the end product as it is very feasible and completely apt for the targeted group to refer to it anytime and anywhere with ease.

Apart from the researchers, the team also received high appreciations from the readers of the targeted group through emails (inbox was flooded) for designing such a tremendously informative book. The feedbacks clearly indicated the effectiveness and worthiness of the resource book. The resource book gave a broader picture to many needy senior citizens, family members, and also to the youngsters as they got to learn about the issues and problems faced by dementia-affected patients and their family members/caretakers, which indeed is a positive sign for prevention of this disease in future. It would be really great to adopt such approaches and is highly recommended to design such communication strategies for disseminating information to masses about newly identified diseases like Ebola, swine flu, dengue, and chikungunya for creating awareness in them and capacity building among family members and caretakers for a healthy world.

Cross-References

References

  1. Brock W (2014) Social security: the qualitative dimension. http://hemispherespublishing.com/social-security-qualitative/. Accessed 8 Oct 2014

Further Reading

  1. Clasper et al (2013) What can social media offer dementia care practitioners? J Dement Care. http://www.careinfo.org/wp-content/uploads/2013/09/21.1.10-11.pdf
  2. Gorman (2000) Defining old age. World Health Organization. http://www.who.int/healthinfo/survey/ageingdefnolder/en/
  3. Kumar et al (2015) Dementia friendly Kerala-the way forward. Kerala J Psychiatry 2395–1486. http://kjponline.com/index.php/kjp/article/view/8/pdf_4
  4. Raina SK, Raina S, Chander V, Grover A, Singh S, Bhardwaj A (2013) Identifying risk for dementia across populations: a study on the prevalence of dementia in tribal elderly population of Himalayan region in Northern India. Ann Indian Acad Neurol 16:640–644. [serial online] 2013 [cited 2017 Dec 31]. Available from: http://www.annalsofian.org/text.asp?2013/16/4/640/120494
  5. Shaji et al (2010) The Dementia India report – prevalence, impact, cost and services for Dementia, Alzheimer’s and related disorders society of India. http://ardsi.org/downloads/main%20report.pdf
  6. Vas CJ et al (2001) Prevalence of dementia in an urban Indian population. 13(4):43950. http://www.ncbi.nlm.nih.gov/pubmed/12003250

Copyright information

© Springer Nature Singapore Pte Ltd. 2018

Authors and Affiliations

  1. 1.Department of Extension and CommunicationThe Maharaja Sayajirao University of BarodaVadodaraIndia

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