Characteristics of a Danish population of adults with acquired deafblindness receiving rehabilitation services

Abstract

The aim of this study is to report on the characteristics of a population of 916 individuals with acquired deafblindness receiving national Danish counselling and rehabilitation services. Age, gender, prevalence, social status, and communication mode are some of the data included in this study. Results show that 70% of the population was older than 79 years, 15% was between 65 and 79 years, and 15% of the population was younger than 65 years. Oral speech was used by 86%, sign language by 10%, and tactile sign language by 4%. Among individuals younger than 65 years, less than 50% was employed or in education. Results are discussed with respect to the organization of the Danish counselling and rehabilitation service system.

Keywords

Acquired deafblindness communication counselling and rehabilitation service dual sensory loss prevalence

Introduction

People who are deafblind (dual sensory impaired) can be classified into two groups: those who are congenitally deafblind, who experience the onset of both hearing and visual impairment between birth and 2–3 years (before development of language, pre-lingual deafblindness; Dammeyer, 2010; Rødbroe & Janssen, 2006), and those with acquired deafblindness, where onset of vision or hearing impairment or both occurs later in life. The focus of this study is acquired deafblindness.

People with acquired deafblindness can further be classified into two subgroups: those becoming deafblind due to the effects of ageing and those becoming deafblind earlier in life as a result of other complications. Several causes of dual sensory loss in old age are found (Saunders & Echt, 2007), with the major causes of vision impairment in old age being macular degeneration, cataracts, and glaucoma (Klaver, Wolfs, Vingerling, Hofman, & de Jong, 1998) and of hearing impairment presbycusis (age-related sensorineural hearing loss; Van Eyken, Van Camp, & Van Laer, 2007). Reports of prevalence of dual sensory loss among older adults vary between 6% and 20% (Chia et al., 2006; Schneider et al., 2012; Slaets, 2007; Smith, Bennett, & Wilson, 2008). It is noteworthy how deafblindness is defined or measured (i.e., medical criteria using audiological visual testing vs. functional definitions using self-report or observation) may influence the outcome of prevalence studies. Medical and functional definitions and assessment procedures may result in different estimations of prevalence. A medical definition may result in a higher prevalence since some people with sensory impairment do not experience functional decline. Similarly, a functional definition may also result in a higher prevalence since people with minor sensory impairment may experience major functional decline. Saunders and Echt (2007) state that clear assessment guidelines and a clear definition of dual sensory loss are lacking. Another limitation of some studies is the study population. For example, did Smith et al. (2008) use a veteran population. A veteran population may experience more hearing impairment due to noise exposure during military service compared to a non-veteran population.

Occurrence of acquired deafblindness among younger people (younger than 65 years) has been estimated to be very rare (Schneider et al., 2012; Smith et al., 2008). Usher syndrome is the most prominent cause of acquired deafblindness and represents about half of the cases of acquired deafblindness in younger individuals (Wittich, Watanabe, & Gagné, 2012) with an estimated prevalence of 5:100,000 (Rosenberg, Haim, Hauch, & Parving, 1997). Usher syndrome is characterized by congenital or acquired deafness and gradual vision loss (retinitis pigmentosa) (Rosenberg et al., 1997).

Some studies can be found concerning the effects of acquired deafblindness on human functioning. As with hearing or vision loss alone, dual sensory loss has been shown to have a number of consequences. Having both vision and hearing impairment appears to have a synergistically negative effect (Saunders & Echt, 2007). Studies find an increased risk of depression (Capella-McDonnall, 2005; Chou & Chi, 2004; Lupsakko, Mantyjarvi, Kautiainen, & Sulkava, 2002) and cognitive decline (Lin et al., 2004) among elderly people with dual sensory loss compared to individuals with vision or hearing loss alone. Deafblindness among the elderly people has also been found to be associated with poor self-rated health and decreased participation in social activities. Elderly people with dual sensory loss have been found to have approximately 10% lower rates of participation in activities such as visiting friends (Crews & Campbell, 2004). Compared with individuals without sensory impairment, elderly people with dual sensory loss experience more activities of daily living (ADL) difficulties (Brennan, Horowitz, & Su, 2005; Keller, Morton, Thomas, & Potter, 1999).

Only a few studies report on characteristics of people with acquired deafblindness younger than 60 years. Practice reports using qualitative interviews have reported difficulties associated with communication, social isolation, and psychosocial functioning including symptoms of anxiety and depression (Gullacksen, Göransson, Rönnblom, Koppen, & Jørgensen, 2011; Miner, 1995; Olesen & Jansbøl, 2005). Living with deafblindness may be challenging with regard to completing an education, adjusting to family life, and partaking in work life (Olesen & Jansbøl, 2005). In a Canadian study of 94 individuals (average age 52.8 years) with acquired deafblindness (Dalby et al., 2009), the majority was found to never have been married and to live alone in private homes or apartments. Unfortunately, the study made no comparison with the general population, so it is difficult to conclude whether this finding was a consequence of acquired deafblindness.

With regard to the use of communication, people with acquired deafblindness are a heterogenic group. The study by Dalby et al. (2009) reported on the communication mode of 94 participants with acquired deafblindness and found that 37.6% used idiosyncratic signs, gestures, and behaviour, 30.9% used adapted or manually coded language, and 62.4% used oral speech (assessors were permitted to report all communication modes the individual used). Most people with congenital deafness (e.g. people with Usher syndrome type I) use sign language (Gullacksen et al., 2011).

The above description of the effect of dual sensory loss on social, cognitive, and communicative functioning makes it evident that special deaf-blind counselling and rehabilitation services are in need (Gullacksen et al., 2011; Heine & Browning, 2002; LeJeune, 2010; Olesen & Jansbøl, 2005; Saunders & Echt, 2007). The organization and provision of counselling and rehabilitation services for individuals with acquired deafblindness vary from nation to nation. Some countries, for example, Norway, Sweden, Denmark (Gullacksen et al., 2011), United Kingdom (Bodsworth, Clare, Simblett & Deafblind UK, 2011), and Canada (Wittich et al., 2012), provide a national or state program offering holistic counselling and rehabilitation services. In Denmark, the Center for the Deaf offers national counselling and rehabilitation services for all adults (>17 years) with acquired deafblindness. The counselling and rehabilitation services are offered to eligible Danish residents and are financed by settlements agreed upon by the local municipalities and the government. An individual with acquired deafblindness is visited at home by a deaf-blind consultant from the Center for the Deaf that offers counselling according to the individual’s needs with respect to communication, social functioning, technical aids and devices, and daily activities. The aim of the counselling is to reduce the various negative impacts of the dual sensory loss.

Saunders and Echt (2007) conclude in a review that more research is needed on the characteristics of acquired deafblindness and the effect dual sensory loss has on individuals of all ages in order to be able to provide appropriate counselling and rehabilitation services. Reports on the characteristics of acquired deaf-blind populations and different counselling and rehabilitation services are needed from different countries. To supplement the few existing research reports, the aim of this study is to report on the characteristics of the Danish population of individuals with acquired deafblindness receiving national counselling and rehabilitation services.

Method

Information about all individuals with acquired deafblindness receiving national counselling and rehabilitation services from the Center for the Deaf in December 2011 was included in this study. This amounted to 916 persons.

The Nordic definition of deafblindness is used by the Center for the Deaf to determine whether an individual is deafblind and thereby eligible to receive counselling and rehabilitation services. The Nordic definition defines deafblindness as a functional condition:

Deafblindness is a distinct disability. Deafblindness is a combined vision and hearing disability. It limits activities of a person and restricts full participation in society to such a degree that society is required to facilitate specific services, environmental alterations and/or technology. (Nordisk Lederforum, 2007)

Information about age, gender, ethnicity, communication mode (oral language, sign language or tactile sign language), number of consultations with a deaf-blind consultant, social status, and number of new referrals including the professional making the referral was obtained. The deaf-blind consultants collected the data by completing a questionnaire form. In order to calculate prevalence of acquired deafblindness, information from the national statistics office (Statistics Denmark, 2012) was obtained.

All data from the questionnaires were gathered and analysed in one database file using descriptive statistics. All data were de-identified so that no personal information was extracted from the database.

Results

Table 1 shows the number of individuals with acquired deafblindness categorized into four age groups. Four of five persons with acquired deafblindness were older than 64 years. Prevalence is nearly stable from age group 18–39 years to age group 40–64 years but increases by 500% from age group 40–64 years to age group 65–79 years and by another 1500% from age group 65–79 years to age group >80 years.

Table 1.

Characteristics of individuals with acquired deafblindness according to age group.

Category	18–39 years	40–64 years	65–79 years	>79 years	All ages
Prevalence	4:100,000	5:100,000	2:10,000	3:1000	2:10,000
	n (%)
Individuals with acquired deafblindness	58 (6)	103 (11)	132 (14)	623 (68)	916 (100)
Gender
Women	37 (64)	49 (48)	85 (64)	471 (76)	642 (70)
Men	21 (36)	54 (52)	47 (36)	152 (24)	274 (30)
Number of consultation in 2011
0	7 (12)	8 (8)	18 (14)	174 (28)	207 (23)
1–3	10 (17)	22 (21)	45 (34)	249 (40)	326 (36)
4–10	18 (31)	19 (18)	37 (28)	135 (22)	209 (23)
>10	23 (40)	54 (52)	32 (24)	65 (10)	174 (19)
Social status
Employed	5 (9)	3 (3)	–	–
Unemployed	3 (5)	3 (3)	–	–
Sick leave	3 (5)	0 (0)	–	–
Job subsidy program	2 (3)	3 (3)	–	–
State Pension	–	–	132 (100)	623 (100)
Disability living allowance	26 (45)	77 (75)
Student	9 (16)	0 (0)
Other	3 (5)	6 (6)
Not known	7 (12)	11 (11)
Individuals with another ethnicity than Danish	12 (21)	1 (1)	1 (1)	2 (0)	16 (2)
Use of communication mode
Oral	8 (14)	71 (69)	97 (73)	437 (70)	613 (67)
Sign language	38 (66)	14 (14)	8 (6)	8 (1)	68 (7)
Tactile sign language	5 (9)	10 (10)	9 (7)	4 (1)	28 (3)
No information	7 (12)	8 (8)	18 (14)	174 (28)	207 (23)

Gender differences exist across age groups. Among individuals older than 80 years, four women received counselling and rehabilitation services for every man. For age group 40–64 years, the number of men and women was equal.

Frequency of counselling consultations is presented for each age group. Consultation frequency was higher for individuals younger than 65 years where around half of the population received more than 10 consultations per year. For individuals 80 years or older, 68% received between 0 and 3 consultations per year.

Among individuals with acquired deafblindness younger than 65 years, only 8 individuals (5%) were employed and 103 individuals (64%) received disability living allowance. All Danish citizens older than 64 years are entitled to receive State Pension.

The majority of the population used oral speech (613 [86%]), 68 (10%) used sign language and 28 (4%) tactile sign language. No information was obtained for 207 individuals. Sign language was more frequently used among individuals younger than 65 years, with 66% of individuals aged between 18 and 39 years using sign language.

A total of 118 individuals with acquired deafblindness were referred to receive national counselling and rehabilitation services for the first time during the year 2011. Of these, 25 (21%) were referred by an ophthalmologic or otologic/audiology clinic, 33 (28%) by a social worker in the local municipality, 11 (9%) by relatives, 27 (23%) by the Acquired Deafblind Association, and 22 (19%) by ‘other’.

A total of 16 individuals (2%) had an ethnicity other than Danish. In the general Danish population (older than 17 years), 12% have an ethnicity other than Danish (Statistics Denmark, 2012). Of the individuals older than 39 years, only 4 had an ethnicity other than Danish, but of the individuals aged between 18 and 39 years, 12 had an ethnicity other than Danish, representing 21% of the individuals in this age group.

Discussion

This study confirms that acquired deafblindness is rare among individuals younger than 65 years but becomes increasingly more frequent among people at older ages (Schneider et al., 2012; Smith et al., 2008; Wittich et al., 2012). The level of prevalence found in this study is similar to a Canadian study also made on a population sample receiving counselling and rehabilitation services (Wittich et al., 2012) but lower than prevalence levels found in studies based on general population studies (Chia et al., 2006; Schneider et al., 2012; Slaets, 2007). The prevalence found in this study may be lower than actual prevalence levels since some individuals may not be recognized as having dual sensory loss or may not be referred to the national counselling and rehabilitation service.

It is noteworthy that more women than men, especially among the elderly people (>64 years), were receiving counselling and rehabilitation services. The same overrepresentation of women was found in other studies, for example, by Wittich et al. (2012). This is likely explained by the fact that 64% of the general Danish population older than 80 years are women (Statistics Denmark, 2012). Average life expectancy is 4 years higher for women (80.7 years) than for men.

A higher frequency of counselling and rehabilitation service consultations per year was allotted to individuals below 65 years compared to individuals older than 64 years. One explanation may be that people below 65 years experience a greater need for counselling and rehabilitation services, for example, when having to adjust and adapt to employment. However, more information is needed about frequency and outcomes with respect to the provision of counselling services to different subgroups. For example, individuals with congenital hearing impairment and progressive loss of vision (e.g. people with Usher syndrome type I) may have some specific counselling needs as a result of changes in communication mode (Gullacksen et al., 2011).

Only a small percentage of the population with acquired deafblindness below 65 years maintains employment. Around half of the population below 65 years of age received disability living allowance. This corresponds to the findings by Dalby et al. (2009) and emphasizes that dual sensory loss creates limitations in ADL.

Only a fraction of the population older than 64 years used a communication mode other than oral language. Individuals becoming deafblind as a result of ageing continue to use oral language for communication. Sign language was used among more than half of the individuals aged between 18 and 39 years. This may reflect the finding that Usher syndrome type I (characterized by congenital deafness) is the major cause of acquired deafblindness in young age (Wittich et al., 2012). Individuals with Usher syndrome type I with residual vision often use sign language (Olesen & Jansbøl, 2005).

Of the total study population, there were only a few individuals with an ethnicity other than Danish, and almost all cases were aged between 18 and 39 years. It may be the case that individuals with an ethnicity other than Danish who become deafblind due to ageing are either not recognized as being deafblind or not offered counselling and rehabilitation services. No other studies could be found reporting on ethnicity and acquired deafblindness, accentuating the need for more research in this area. Among individuals aged between 18 and 39 years, the number of individuals with ethnicity other than Danish was not lower compared to the Danish population in general. Again, more research is needed to investigate whether this finding is a coincidence or how this possible overrepresentation can be explained.

It is notable that only 21% of the individuals referred to receive counselling, and rehabilitation services were referred by an ophthalmologic or otologic/audiology clinic. A greater awareness of the consequences of dual sensory loss and the need for special counselling and rehabilitation services seems to be needed in the Danish primary health-care system. Heine and Browning (2002) note in their international review paper that a unimodal approach to elderly people with sensory impairment is often employed in public health services neglecting the presence of dual sensory loss. LeJeune (2010) points to similar observations based on information from nine focus groups with 68 individuals with acquired deafblindness. The issue does not seem to be limited to a Danish context. More research is needed to explain this possible neglect of dual sensory loss in the public health-care system.

Counselling and rehabilitation services for individuals with acquired deafblindness – perspectives and recommendations

The fact that a large part of the population in this study received disability living allowance brings attention to the fact that acquired deafblindness often has severe consequences. As reported in international research, the combination of hearing and vision impairment can have a synergistically negative effect on communicative, psychological, social, ADL, and cognitive functioning (Saunders & Echt, 2007). Dual sensory loss may result in both different and more severe disabilities than vision or hearing impairment alone. Provision of special assessment and rehabilitation services to people with dual sensory loss is therefore important (LeJeune, 2010; Saunders & Echt, 2007).

This study found a huge variability in the acquired deaf-blind population with respect to age, communication mode, and social status. LeJeune (2010) describes the need for different types of counselling services depending on the individual and problem in question. Heine and Browning (2002) argue that rehabilitation services for older adults with sensory loss needs to be viewed from a holistic and multidisciplinary perspective. Suggested issues in rehabilitation are use of visual aids, hearing aids and assistive devices, visual and auditory training, and social intervention and support (Heine & Browning, 2002; Saunders & Echt, 2007).

The variability of counselling visits per year found in this study reflects the individualistic approach taken by the Danish counselling and rehabilitation service system. The Danish counselling and rehabilitation service for individuals with acquired deafblindness offers the following different types of counselling service: (1) Assessment of dual sensory loss and its impact on functioning. In complicated cases (e.g. multiple disabilities), a national multidisciplinary expert team of medical, psychological, and pedagogical specialists is used; (2) one-to-one consultations by a deaf-blind consultant at home; and (3) educating and training social workers, teachers, and other professionals in the effects of dual sensory loss.

According to the variability of communication modes used among the study population, the deaf-blind consultants master both sign language and tactile sign language. The deaf-blind consultants are typically educated as social workers or occupational therapists and are trained in deaf-blind counselling. Because vision and hearing impairment is often progressive and presents a variety of challenges, it is important for the deaf-blind consultants to know the person they are working with and be a step ahead of the impending consequences of dual sensory loss. Preparing training in tactile sign language and Braille and reducing social isolation by arranging meetings with other individuals with dual sensory loss are examples of possible interventions (Gullacksen et al., 2011).

Limitation

The population included in this study consisted of individuals receiving national counselling and rehabilitation service in December 2011. This population may not be representative of all people with acquired deafblindness. Elderly individuals may not be identified as deafblind, may not be offered deaf-blind services, or may simply be refused services and therefore do not receive national counselling and rehabilitation services.

More knowledge is needed about how dual sensory loss may impact different social, communicative, psychological, and cognitive issues for people at different ages. More research is also needed on the outcomes of the counselling and rehabilitation service in relation to specific issues. To mention just a few issues, future research could investigate how counselling and rehabilitation services can most efficiently support communication and intervene to prevent depression and cognitive decline.

Conclusion

Acquired deafblindness is a rare occurrence among people younger than 65 years, but prevalence increases drastically from age 65. Among individuals younger than 65 years, less than half of the population was employed or in education. Individuals with acquired deafblindness were found to be a heterogeneous group according to the use of communication mode and number of counselling and rehabilitation visits per year. Because of an ageing population in many countries, an increasing number of elderly people with acquired deafblindness must be expected. More research is needed about the characteristics of people with acquired deafblindness.

Footnotes

Acknowledgements

We thank the deaf-blind consultants at the Center for the Deaf for data collection and Anette Rud Jørgensen, Center for the Deaf, for comments and critique to the draft of this article. Finally, we thank Annette Biilmann, Center for the Deaf, for assisting with the data analysis.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

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