The Personhood of Dementia Care in Residential Service
The Personhood of Dementia Care in Residential Service
“Service for people with dementia is non individual, as individualized service is a high-cost high prestige type of service delivery. In contrast, the services for people with dementia are often institutionalized……. . ” (Cheston & Richard, 1999, p.13)
With the rapid ageing population growth (香港耆康老人福利會, 2002；HKSAR Census & Statistics Department, 2000) and increasing number of elderly with dementia, an uplifted demand for institutional long term care is resulted. In response to the public demand for dementia services, the Hong Kong Permanent Secretary for Labour and Welfare claims that 1700 million dollars are allocated as Dementia Supplement in 2009 and 2010 for subsidy of elderly with dementia (成報，26/02/2009). What seems a welcome change unexpectedly gives rise to controversies over the issue about insufficient resources and lowering quality of care for elderly with dementia (香港特別行政區政府新聞處,09/10/2009; 東方日報, 10/10/2009).
Whether the resources for elderly with dementia are sufficient and compatible is a matter for debate and concern. And the issue of (1) manpower resources in service setting and (2) knowledge and skill in a multidisciplinary team as well as (3) care and control for service user will then be examined in regard to macro, mezzo and micro level with the personal reflection of effectiveness and adequacy of Hong Kong elderly with dementia related policies. All these issues which are significant demand our concern and they will be thorough explored and examined as follow with personal relevant working and placement experiences.
Manpower resources in service setting
Person with dementia is an individual with personhood rather than the experience of illness (Cottrell & Schulz 1993). It calls for person centred care that concerns social interaction to maximize the chance for quality of life (Kitwood, 1997). However, it seems that individual caring cannot be given to the elderly residents with dementia in Care and Attention Home for elderly (C & A Home) because of the inadequate resources in manpower. From macro and mezzo perspective, insufficient subsidy from the government as well as the matter of shortage of human resources in nursing home is serious and it brings negative impacts on the service users.
Based on the observation from the pervious placement unit and literature review, staff has to complete a series of task within a period of time under the institutional routine (Elizabeth A. el at, 1997). Speaking of the role of care worker, they have the responsibility for bathing, feeding, dressing, meal provision, monitoring blood pressure and blood sugar levels, accompanying to medical consultations for the residents with dementia especially those who are in moderate and later stage. And now, it is not uncommon to see that they even need to deal with paper work. One of the incidents regarding to the issue of shortage of human resources in a C & A home inspire me a lot that a resident with moderate dementia rejected to be fed in lunch time as he said that he had eaten in the morning and felt so full now, however, the care worker ignored the reaction and response given and continued with her feeding behavior even though the resident spat out the eaten food. The workers honestly said that she had no choice for doing so and she explained she would not have any more time to feed the resident later if he didn’t eat now as no one would be available for feeding him after lunch that everyone had many and different remaining works which needed to be completed. However, it is clear to see that the feeling of unwillingness was vividly presented on the resident’s facial expression at that moment.
Indeed, someone may argue that worker can deal with this matter in various ways instead of compulsorily forcing the resident to finish his lunch during lunch time. For instance, care worker can be more flexible to stop feeding the resident at that moment if he temporarily insists on refusing to have lunch. But later, feeding can start again when resident feels hungry. However, workers usually will not do so because of the staff convenience. Obviously, worker is task-oriented and pays less attention to the psychological status of the residents owning to the increasing demand of the workload and shortage of manpower. It is undoubted that care worker has such performance as she know that there are still many remaining uncompleted tasks which staff must follow the procedures to finish on that day, otherwise, the working schedule may be delayed and even will have a threat of being scolded by supervisor (明報, 15/11/2009).
RResidents with dementia need for more special care from human resource. According to Chapter nine of the Residential Care Homes Ordinance, there is different manning ratio in different period of time a day. Normally speaking, the staff client ratio is 1:20 in a C & A Home in the morning. Needless to say, residents with dementia even require much more manpower in caring than others (Burnside, 1994; 香港耆康老人福利會,2002). Yet, such kind of residents with dementia who needs more special care usually is neglected in the home because there are insufficient resources in manpower to provide them with intangible services. We can imagine that how serious of the matter of shortage of human resources in nursing home actually is (For detail, please refer to AppendixⅠ). In fact, not only care worker, but all staff is also so rush to provide service for client. It seems that all staff who are task oriented have became machine without thinking and feeling, care and concern to produce a set of product for the service user. Such pattern of caring services trends to be restricted to basic nursing and personal care without genuine and intangible support (Chan, 2004). All-round caring is less likely offered owning to the shortage of human resources and the increasing demand of the workload of staff. The decreasing quality of care is resulted because of the task oriented caring (For detail, please refer to AppendixⅡ).
Knowledge and skill in a multidisciplinary team
Apart from the matter of shortage of human resources, insufficient dementia related knowledge and skill as well as lack of interaction within a multidisciplinary team also are the major culprits to lower the quality of care for the residents with dementia. Taking an event from my placement experiences as an example, there was a sensory stimulation program with the provision of various materials such as ink, straw, paper, sticker and etc. to encourage residents with dementia to design a picture. Without sufficient knowledge and experiences of my colleague to work with this kind of residents, an incident which a resident with dementia sucked the ink through a straw as he cognitively believed the ink was liquid and could be seen as water to drink was resulted, and this resident was instantly delivered to hospital. Needless to say, the occurrence of such event is mainly owning to the insufficient dementia related knowledge, inadequate of understanding of residents’ attributes and the lack of relevant working experiences. Of course, multidisciplinary interaction and cooperation is also a significant factor in this aspect.
Concerning the cooperation of multidisciplinary, it is essential for staff to get better understanding of client needs through the collaborative learning in a nursing home.
Interaction between various professionals in different ways such as non-verbally communicating by a log book, case recording, medical recording and verbally interacting through staff meeting and case conference is useful for all staff to understand the real situation and condition which is the most up to dated of the residents with dementia are (For detail, please refer to AppendixⅢ). I have noted the importance of the interaction with different professional during this summer block placement in the C & A Home. Again, there was a program of sensory stimulation organized and implemented for 20 residents with early and moderate stage of dementia to take part in.
To have better preparation, student worker tried to consult different professionals like occupational therapist, social worker, nurse, welfare worker and even care worker to get initial understanding of the members’ attributes and the matters organizer needed to concern about how to work with residents with dementia. For instance, due to insufficient human resources and the fact that most of the programs for elderly with dementia require more manpower than other non dementia related activities, student worker was encouraged to invite some volunteers to be the helpers to carry out the program. It is also suggested to break those activities into a series of small individual tasks as members are more able to concentrate on completing the work without creating a sense of inferiority and disempowerment. Liquid and some bean liked materials are reminded to avoid being used as well. All these points reminded to beware during carrying out a program for dementia residents are small but significant, and the consequences will be serious if they are neglected.
A released survey conducted by The Hong Kong Polytechnic University about addressing the informational needs of healthcare professionals in dementia care illustrated (Chung & Lai, 2003) that the nursing respondents’ level of perceived knowledge of dementia care was lower than that of rehabilitation therapists. Communicating with colleague is therefore essential since each professional has the strengths and weaknesses in regard to the knowledge and skill. I firmly believe an efficient multidisciplinary working can bring benefits to residents (Collelly et al., 2009). Dementia related profession training and multidisciplinary working workshop which is important for well equipped knowledge about dementia care and build up the team spirit, and even more significant, offering a chance for worker to have relaxation under stressful working condition. However, they are not usually provided for the staff in C & A home to participate based on my observation and working experiences in the field as well as literature review (關銳煊等, 2004).
Care and control for service user
“Autonomy leads us to reflect on questions of power, on others who can support or suppress autonomy, bring it resources or restraints.” (Collopy, 1994, p.173)
From macro perspective, elders with dementia are always regarded as low status and useless people without autonomy and personal rights in Hong Kong. A literature search also indicates (鄞志輝及梁穎恒, 2006) that elderly with dementia are stigmatized as social burden and recipients (香港耆康老人福利會, 1992; 周永新, 2000)owning to ageism in the person in environment context. Elderly residents with dementia feel their decline in social status and power, and become dependent on others (Dowd, 1975) because of routinization and , depersonalization, (梅陳玉嬋等, 2008) in the process of institutionalization. While entering a care and attention home constitutes both stress and traumatic experiences to the residents (Kaplan, 1983) as there are many restriction on them. Of course it goes without saying that residents with dementia are restrained to ensure the physical safety. However, improper use of restriction may lead to a feeling of frustration, uncertainty, helplessness and loss of autonomy of the residents (Werezak & Stewart 2002; Phinney, 1998; Mills, 1997; Kitwood, 1997).
I have ever been a program worker for a number of years in a home for elderly where were some residents with early and moderate stage of dementia. It was a pity to see that some of them wearing strait jackets restrained within a chair were usually put aside into the sitting room in the home to be supervised over night in order to avoid creating any disturbance to other residents. I was curious why the care worker was still doing so even though they had already fallen asleep, and the worker responded that it was not possible to let them back to the living room as it would bring them troublesome, probably talking about the occurrence of the incidents like wandering, once they woke up and left the bed. However, this prolonged restriction not only lower the self care capacity and create physical reactions like yelling, but also, more important, reduce the personal autonomy (HKADA , 2009; Helen, 1998).
Everyone is inherent unique and has dignity, even people with dementia. Reamer (1987) states that human being have rights to be respected. The right and autonomy of residents should also be cared and concerned. Workers actually could attempt to use other methods instead of restriction on residents to reduce their behaviour problems. For example, worker can let residents to have some relaxation activities simply like watching TV. What’s more, alarm can be installed to ensure whether residents are on the bed or not. In fact, literature demonstrates that there are some restraint reduction programs provided for residents with dementia in western countries to enable them to be released from physical restraints and still be safe (Helen, 1998). I am not saying that residents must not be restrained although they are in danger. Once again, it is reasonable that residents should to be restrained to ensure the physical safety. But what I want to mention is that to residents with dementia, respect and genuineness are indispensable elements in caring process and extremely important for them.
No Doubt residents with dementia demand to have care rather than control. I will not forget the facial expression of residents with strait jackets which bring them countless suffering. Although they have cognitive impairment, it doesn’t mean that they are loss of emotion reactions. They still have feeling, both positive and negative, in response to human behavior (Rader, 1995). They are indeed as normal as us and need to meet the basic needs as described by Maslow ( Maslow, 1970) and the core value of personal identity (Harris & Sterin, 1999). But, it is a pity to say that, most of time, the personhood of residents with dementia is eliminated during the caring process partly because of safety concern, and mainly due to the staff convenience.
It is a pity that in such an economically advanced city, we are so far behind the times, and behind the countries like UK, and USA (Helen, 1998), when it comes to talking about the issue of dementia care in Hong Kong. The task of dementia care is the maintenance of personhood. Intangible support like care and respect are important for residents in the caring process. Staff should recognize that the caring patterns are always dynamic based on the principle of individuality. However, many unfavorable macro, mezzo and micro factors such as shortage of resources, insufficient professional training, inadequate of dementia related knowledge of staff, problem of depersonalization and the issue of loss of autonomy of residents, all contribute to the services of task oriented and goal directed rather than the provision of the intangible support to service users and this eventually lower the quality of care to the residents (For detail, please refer to AppendixⅣ).
Nevertheless, this article is good for student to reflect and address the limitations of the policy making and presenting services provided for elderly residents with dementia in nursing home. Of course it is much better to further explore certain issues. Should our community be alerted to the issue of dementia care? Do the subsidy for elderly residents with dementia are sufficient? How many manning ratio do worker prefer in the nursing home? Are there any measures to maintain and facilitate the development of personhood? How can the services be personalized under the circumstance of institutionalization? All these should be addressed. Sufficient and effective dementia care policies should be extensively carried out as well. The question is just when and how. (2502)
1. 周永新 (2000).《餘暉晚照: 香港老人的樂與憂》, 香港 : 天地, 頁41-45
2. 東方日報 (29/07/2008). 《癡呆長者缺支援A06》. 港聞.
3. 東方日報 (10/10/2009). 《本港對癡呆長者乏支援》. A04. 港聞.
4. 香港耆康老人福利會 (1992). 《安老服務迴響集》.香港: 香港耆康老人福利會,頁122-123
5. 香港耆康老人福利會 (2002) 《美麗的失智世界香港》. 香港:香港耆康老人福利會
6. 香港特別行政區政府新聞處(中文版) (09/10/2009) .《勞工及福利局局長就支援老人癡呆長者與傳媒談話內容》. 香港:新聞處.
7. 明報 (15/11/2009).《安老院護理員不足,長者留廁格3小時》. 港聞.
8. 關銳煊等 (2004).《護老者綜合服務論叢》.香港: 天地圖書有限公司.
9. 成報 (06/02/2009).《逾70歲長者一成患癡呆症》. A09. 醫健專版.
10. 梅陳玉嬋等(2008).《廿一世紀老年社會工作》. 香港: 香港大學出版社
11. 鄞志輝及梁穎恒 (2006).《長命百歲 老有所為》. 香港:明報.
12. Brooker, D. (2007). “Person-centred dementia care : making services better”. London: Kingsley Publishers
13. Burnside, I. & Schmidt, M.G. (1994). “Working with Older Adults: Group Process and Techniques (3rd Ed.)”. Boston: Jones and Bartlett.
14. Chan, A. (2004). “Report on the study of the relationship between formal and informal caregivers in caring for older people”. HK: Lingnan University & Christian Family Service Centre.
15. Cheston R. & Bender M. (1999). “Understanding dementia : the man with the worried eyes”. London ; Philadelphia : J. Kingsley Publishers
16. Chu L.W. &Pei C.K.W. (1997). “Morbidity patterns of persons waiting for infirmary 27 care in Hong Kong”. Journal of HKM, Volume3, pp.362-368.
17. Chung, C. C. & Lai, K. Y. (2003). “Addressing the informational needs of healthcare professionals in dementia care: an explorative study in a Chinese society”. Journal of Aging & Mental Health, Volume 7, p.287-293
18. Cottrell V. & Schulz R. (1993). “The perspective of the patient with Alzheimer’s disease: a neglected dimension of dementia research”. Journal of the Gerontologist. Volume 33, p. 205–211.
19. Connelly, D., et al. (2009). “Dementia care: a practical manual”. New York : Oxford University Press.
20. Dowd, J. (1975). “Aging as exchange: A preface to theory”. Journal of Gerontology, Volume 13, p.584-594.
21. Elizabeth A. et al. (1997). “Perceptions of physical restraint use and barriers to restraint reduction in a long-term care facility”. Journal of Aging Studies, Volume 11, Issue 1, P49-62
22. Gubrium, J. F. (1975). “Living and Dying at Murray Manor”. New York: St. Martin.
23. Harris P. & Sterin G., (1999). “Insider’s perspective: defining and preserving the self of dementia”. Journal of Mental Health and Aging 5(3), 241–256.
24. Hellen, Carly R. (1988). “Alzheimer's disease: activity-focused care”.
25. HKSAR Census & Statistics Department, (2000). “Hong Kong Population Projections 2000-2031”. Hong Kong: HKSAR Census & Statistics Department
26. Kitwood T., (1997). “Dementia Reconsidered: The Person Comes First”. Open University Press, Buckingham.
27. Ng Ka Man & Wong Yiu Ming, (1998) “Dementia care in Hong Kong-'a resource book”. Hong Kong: Services for the Elderly Division & The Hong Kong Council of Social Service.
28. Mills M.A., (1997). “Narrative identity and dementia: a study of emotion and narrative in older people with dementia”. Journal of Ageing and Society, Volume 17, p. 673–698.
29. Phinney A. (1998). “ Living with dementia from the patient’s perspective”. Journal of Gerontological Nursing, Volume 24, p. 8–15.
30. Mok E., Lai C.K.Y., Wong F.L.F. & Wan P. (2007). “Living with early-stage dementia: the perspective of older Chinese people”.. Journal of Advanced Nursing, Volume 59, p. 591–600
31. Rader, J. (1995). “Individualized dementia care : creative, compassionate approaches”. New York: Springer Pub. Co
32. Werezak L. & Stewart N. (2002). “Learning to live with early dementia”. Journal of Nursing Research, Volume 34, p. 67–85.