The needs of caring people with dementia and their family care-givers

Editorial
*Heng-Hsin Tung1,2, Kuei-Hui Chu3, Ru-Yu Lien4, Ching-I Hsu5
1National Yang Ming University, School of Nursing, Taipei, Taiwan
2Tungs’ Taichung MetroHarbor Hospital, Taiwan
3Department of Nursing, Ching Kuo Institute of Management and Health, Keelung, Taiwan
4Nursing Department, Taipei Veterans General Hospital, Taipei, Taiwan
5Nursing Department, Heart Center, Chen-Hsin Hospital, Taipei, Taiwan
DOI:http://dx.doi.org/10.24816/jcgg.2018.v9i1.02

  • Abstract
  • Full Text
  • References

Abstract

This paper provides a description of the needs of people with dementia and their family caregivers based on clinical experience of the experts and compare the difference between literature and real clinical experience. We found that the needs of people with dementia include medical treatment, a safe environment, mental support, and dignity, which is consistent with previous research. We also found that the needs of the dementia people’s family include physical, mental,bsocial, and economic aspects, which is in keeping with previous research. In addition to what is seen in the existing literature, we found that     the primary caregiver generally insists on taking care of the people with dementia until the patient dies, although, at times, the caregiver dies first. Although caregivers become weary of looking after people with dementia, they are not comfortable putting them in a long-term care facility. This finding is different from that of Western research and can be attributed to filial piety or the traditional role of women in Chinese culture.

Article Outline

  1. Needs of people with dementia based on expert clinical experience
  2. Needs of family caregiver based on experts clinical experience
  3. Difference between literature and expert clinical experience
  4. Conflict of interest statement
  5. References

Abstract

This paper provides a description of the needs of people with dementia and their family caregivers based on clinical experience of the experts and compare the difference between literature and real clinical experience. We found that the needs of people with dementia include medical treatment, a safe environment, mental support, and dignity, which is consistent with previous research. We also found that the needs of the dementia people’s family include physical, mental,bsocial, and economic aspects, which is in keeping with previous research. In addition to what is seen in the existing literature, we found that     the primary caregiver generally insists on taking care of the people with dementia until the patient dies, although, at times, the caregiver dies first. Although caregivers become weary of looking after people with dementia, they are not comfortable putting them in a long-term care facility. This finding is different from that of Western research and can be attributed to filial piety or the traditional role of women in Chinese culture.

wcompare the difference between literature and real clinical experience.hen individuals become old, the incidence of dementia increases.1 In 2016, the older people comprised 13.2% of the population, and 8% had dementia.2,3 Meeting the medical and social service needs of people with dementia and their family caregivers is critically important. Therefore, this paper provides a description of the needs of people with dementia and their family caregiver based on clinical experience of the experts and compare the difference between literature and real clinical experience.

1. Needs of people with dementia based on expert clinical experience

The self-care ability of people with dementia declined due to the aging and disease processes. Patients needed help to maintain physical function includes 1) basic physical needs refers to pain control, appropriate food intake, cleanliness, and overall comfort ; 2) assistive devices in living environment which means patients need assistive devices for daily living because they have lost strength and move slowly; 3) fall prevention because people with dementia have a high risk of fall due to degeneration of the cerebellum and the side effects of medication that include positional hypotension, gait imbalance, and dysfunction;

4) health status as related to medical support such as after a diagnosis of dementia, people with dementia will return to the outpatient clinic periodically to control the disease; 5) daily activity and rehabilitation since these can help to improve patients’ physical function, balance, and gait stability; 6) nutritional support because some patients cannot take food by themselves or have a poor appetite, which could cause malnutrition.

Concerning needs of people with dementia in mental aspects embrace 1) family support due to pathophysiological changes in people with dementia, the people with dementia feel insecure and need family support; 2) emotional support since patients’ dementia affects their family’s lives, particularly when patients feel suicidal ; 3) facilitating recall of memories refers to people with dementia need recall their past and their hobbies as such, can help them to improve their cognitive function; 4) dignity since patients and their families hoped that the patient would die with dignity.

2. Needs of family caregiver based on experts clinical experience

Next, focused on needs of family caregivers . First of all, family caregivers have the physical needs which include 1) quality of sleep since primary caregivers do not get enough sleep and may need medication to help them to sleep; 2) health care needs because taking care of a person with dementia is stressful work, with a huge burden, especially if the caregiver is his or her spouse. A spouse might be older people, he or she might have an underlining chronic disease or become sick when playing the role of primary care provider. Second, the needs mental aspects: 1) religion to help family members to maintain a stable emotional status as well as provide emotional support; 2) release emotional stress since family members who take care of people with dementia are under a great deal of stress for a long time. Thus, they need to find a way to release their stress and relax; 3) sense of relief refers to when people with dementia die, the family members who take care them feel relief; 4) family support since primary care providers need another family member to share their emotional load.

 

In addition, the need of family caregivers of people with dementia in health care information aspects include ; 1) professional skills training because those who take care of people with dementia need basic professional skills;

2) healthcare information means having healthcare information related to the dementia care. Regards the needs of social aspects, the family caregivers’s need social interaction and financial support to cover health care services. Another important need is respite services because they can take a break and have their own time and space to do what they like to do.

3. Difference between literature and expert clinical experience

We found that the needs of people with dementia include medical treatment, a safe environment, mental support, and dignity, which is consistent with previous research.4,5,6 We also found that the needs of the dementia patient’s family include physical, mental, social, and economic aspects, which is in keeping with previous research.4,7,8 In addition to what is seen in the existing literature, we found that the primary caregiver generally insists on taking care  of the dementia patient until the patient dies, although, at times, the caregiver dies first. Although caregivers become weary of  looking after people with dementia, they are not comfortable putting them in a long-term care facility. This finding is different from that of Western research and can be attributed to filial piety or the traditional role of women in Chinese culture.

Conflict of interest statement

There are no conflicts of interests including financial, consultant, institutional and other relationships that might lead to bias.

References

  1. Wu IH and Lin MH. Dementia care. Clinical Medicine. 2017;79(1):19-25. [Abstract and article in Chinese]
  2. Ministry of Interior. statistic data of population distribution in 2016. Available at: http://www.moi.gov.tw/stat/news_content. aspx?sn=11554. [Accessed 1 March 2017].
  3. Ministry of Health. Development of dementia continuous integrated care model. Available at: http://www.mohw.gov.tw/cht/DOS/. [Accessed 1 March 2017].
  4. Johnston D, Samus QM, Morrison A, Leoutsakos JS, Hicks K, Handel S, et al. Identification of community-residing individuals with dementia and their unmet needs for care. Int J Geriatr Psychiatry. 2011;26(3):292-8.
  5. Srivastava G, Tripathi RK, Tiwari SC, Singh B, Tripathi SM. Caregiver Burden and Quality of Life of Key Caregivers of Patients with Dementia. Indian J Psychol Med. 2016;38(2):133-6.
  6. Van Alphen HJ, Hortobagyi T, van Heuvelen MJ. Barriers, motivators, and facilitators of physical activity in dementia patients: A systematic review. Arch Gerontol Geriatr. 2016;66:109-18.
  7. Joling KJ, van Marwijk HW, Veldhuijzen AE, van der Horst HE, Scheltens P, Smit F, et al. The two-year incidence of depression and anxiety disorders in spousal caregivers of persons with dementia: who is at the greatest risk? Am J Geriatr Psychiatry. 2015;23(3):293-303.
  8. Liu S, Li C, Shi Z, Wang X, Zhou Y, Liu S, et al. Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer’s disease caregivers in China. J Clin Nurs. 2017;26(9-10):1291-300.

References

  1. Wu IH and Lin MH. Dementia care. Clinical Medicine. 2017;79(1):19-25. [Abstract and article in Chinese]

  2. Ministry of Interior. statistic data of population distribution in 2016. Available at: http://www.moi.gov.tw/stat/news_content. aspx?sn=11554. [Accessed 1 March 2017].


  3. Ministry of Health. Development of dementia continuous integrated care model. Available at: http://www.mohw.gov.tw/cht/DOS/. [Accessed 1 March 2017].


  4. Johnston D, Samus QM, Morrison A, Leoutsakos JS, Hicks K, Handel S, et al. Identification of community-residing individuals with dementia and their unmet needs for care. Int J Geriatr Psychiatry. 2011;26(3):292-8.


  5. Srivastava G, Tripathi RK, Tiwari SC, Singh B, Tripathi SM. Caregiver Burden and Quality of Life of Key Caregivers of Patients with Dementia. Indian J Psychol Med. 2016;38(2):133-6.


  6. Van Alphen HJ, Hortobagyi T, van Heuvelen MJ. Barriers, motivators, and facilitators of physical activity in dementia patients: A systematic review. Arch Gerontol Geriatr. 2016;66:109-18.


  7. Joling KJ, van Marwijk HW, Veldhuijzen AE, van der Horst HE, Scheltens P, Smit F, et al. The two-year incidence of depression and anxiety disorders in spousal caregivers of persons with dementia: who is at the greatest risk? Am J Geriatr Psychiatry. 2015;23(3):293-303.


  8. Liu S, Li C, Shi Z, Wang X, Zhou Y, Liu S, et al. Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer’s disease caregivers in China. J Clin Nurs. 2017;26(9-10):1291-300.