Advanced dementia is a condition where palliative care is required, but knowing when to initiate this process can be difficult. Clinical indicators such as recurrent aspiration pneumonia, recurrent fevers, and eating difficulties accompanied by significant weight loss can be useful in predicting life expectancy, although they often vary. Therefore, when considering a palliative approach, focusing on the individual’s care and quality of life goals rather than the life expectancy (ie the amount of life) should guide.
Key Application Points
• Improving quality of life, maintaining function and maximizing comfort are key goals at different stages of dementia treatment, but the emphasis on specific goals changes over time.
• Estimating the life expectancy of a person with advanced dementia can be difficult; Eating difficulties accompanied by recurrent aspiration pneumonia, febrile episodes, and weight loss of> 10% have been identified as predictors of six-month mortality.
• Discussions about the role of palliative care in dementia management should be conducted with the patient as part of further care planning and should continue with the family or who as the person’s cognitive capacity and physical function decrease.
• Spiritual and cultural practices can help meet the psychosocial needs of people with severe dementia; for example, they can recognize rituals, songs or religious services and find them comfortable.
• Referring people with severe dementia who are being cared for at home to local Need services so that carers can access respite and other support services
A Palliative Approach to Dementia Treatment
Palliative care defines a person and family / human-centered approach to care for someone with life-limiting or terminal illness. The primary goal is to help a person live his life as fully and comfortably as possible until he dies, and to support his family through illness and death. Palliative care is not intended to accelerate or delay death, but instead focuses on improving a person’s quality of life by identifying, evaluating or treating symptoms such as distress or pain, and addressing one’s physical, psychosocial, and spiritual needs. Palliative care may be appropriate after death days, weeks, months, or years, and can occur with treatments aimed at extending a person’s life.
Palliative care has traditionally been most associated with advanced cancer care, but dementia is also considered a terminal condition where this process is required. It can be difficult to know when to start palliative care in the context of dementia management. Factors contributing to the complexity of this decision include:
There is often a long time between diagnosis and death
• The prognosis is often uncertain; The rate and pattern of progression varies depending on factors such as dementia subtype, severity at diagnosis, and age, and comorbidities.
• Advanced dementia patients cannot express their palliative care preferences due to severe cognitive impairment.
Management Changes As Dementia Progresses
Improving quality of life, maintaining function and maximizing comfort are the goals of care in the different stages of dementia, but the emphasis on specific goals changes over time. In the early stages of dementia, management typically focuses on slowing the rate of symptom onset and progression, helping the person stay active and independent, and planning their future care. In the middle stage, interventions aimed at slowing symptom progression often become ineffective, and the focus of care shifts to managing the behavioral and psychological symptoms of dementia (BPSD) and maintaining patient safety. As dementia progresses to the advanced stage and the person’s health needs become more complex (see below) and quality of life decreases, care is increasingly focused on maximizing comfort, which may be at the expense of life expectancy.
Health Needs of Advanced Dementia Patients Becoming Increasingly Complex
In addition to severe memory loss, people with advanced dementia may have pain (due to various underlying causes), significant difficulties with eating and swallowing, limited speech or mobility, incontinence, and BPSD. At this stage, 24-hour maintenance is required. The scope of this care varies – some people are cared for at home, some in inpatient care (i.e. nursing homes, long-term hospitals, dementia units or psychoeriatric units), others may require specialist palliative care (hospital-level or hospice). Some of the symptoms of advanced dementia, such as difficulty swallowing, incontinence and inactivity, make people highly susceptible to additional problems such as infection and malnutrition.
Loss of communication skills makes it difficult for clinicians to evaluate, diagnose and monitor treatment effects in patients with advanced dementia; family / chemistry or other caregivers are trusted to provide this information.
Prediction of the Advanced Stage of Dementia
The duration of the advanced stage of dementia is variable, but usually takes one to three years. 7 A person with advanced dementia is said to be nearing the ‘end of life’ when they are likely to die within 12 months, but this can be difficult to predict. 1 Recurrent aspiration pneumonia, febrile episodes, and eating difficulties accompanied by weight loss of> 10% over six months have been identified as some markers of transition from advanced dementia to the end of life, each associated with six months. (monthly mortality rate 40–50%)
Advance Care Planning and Goals
Ideally, discussions about the role of palliative care in advanced dementia would have occurred as part of the advance care planning (ACP) process and would be ongoing, with / with the family, because this disease causes declines in one’s cognitive capacity and physical function. A health event will require decisions to undertake potentially life-prolonging care, such as antibiotic therapy or assisted ventilation, as opposed to a palliative approach that focuses on, for example, infection or incipient breathing difficulties, symptom management and comfort. This is likely the person’s proxy decision maker (permanent power of attorney). [EPOA] or by the welfare guardian) on clinical advice. By setting patient preferences and goals of care, ACP can help reduce the burden of decision making and reduce the likelihood of unwanted interventions at the end of life.
Advanced Care Planning for Dementia Patients
A “whole person” approach that addresses physical, psychological, spiritual and cultural needs is essential for the provision of palliative care. General practitioners are often well aware of these needs because of their longstanding relationship with the patient. Even if responsibility for care is transferred to another primary healthcare provider or secondary care, it is important that the clinician be involved as much as possible to ensure continuity of care.
People with advanced dementia are often unable to communicate their needs, which can result in behavioral or psychological symptoms. Cultural or spiritual practices can help meet the psychosocial needs of people with severe dementia, as they can recognize culturally or spiritually important things and find comfort in them despite having severe cognitive impairments.
Definitions and experiences of spirituality differ between people and cultures. In general, spirituality can be considered to encompass a person’s beliefs and values, a sense of meaning or purpose in life, commitment, identity and awareness, and for some, belief and religion. For example, spiritual expression can be found in nature, relationships, services, practices, rituals, music, or art. These preferences should be explored with whom the patient and family are part of further care planning.
Supporting Caregivers of Advanced Dementia Patients
Caring for a person with dementia at home can create significant stress and strain on the caregiver and their family. The trajectory of long-term decline in dementia, compared to other deadly conditions, such as most cancers, creates a scenario of long-term caregiver needs that are difficult to sustain. As the dementia progresses and the person becomes more and more addicted, the caregiver may feel limited, isolated, lonely and exhausted, especially if they are an elderly person with their own health problems. There is often a feeling of loss for the person they know and their life together, and they may also feel anger at losing their independent life.
Information on How Caregivers Access Temporary Care
Support for caregivers is crucial to helping them maintain their well-being and can help the dementia sufferer stay home longer. Temporary care is any support or service that helps those caring for a person with dementia or other chronic health problems take a break. Informal, eg asking from family or friends or formal, eg employing a support worker, arranging for the demented person to attend a day schedule or night care. Ensure that caregivers of dementia patients are aware of the availability of temporary care and provide them with information from organizations responding to local Needs to access funded temporary care services.
Transition to Inpatient Care
For many people with dementia, a palliative approach will likely be provided in the residential care setting. However, hospice services are also available for these patients, and referral should be considered if their level of need exceeds the primary palliative care provider’s resources. There are challenging conditions for caregivers, and discussions and decisions about moving the person from home to residential care can be triggers. These triggers can be listed as follows;
• If the caregiver cannot provide the level of care required by the dementia patient,
• If the caregiver is unable to cope with the pressure and intensity of providing 24-hour care or needs to prioritize their health or quality of life
The home is no longer safe for a dementia patient,
These discussions can be initiated by the caregiver, other family members, or a healthcare professional. The decision can be challenging for the caregiver, who may feel guilty or incompetent, and can cause conflicts between families, for example, if there are different opinions about who should provide care and where. These organizations can provide support to help them tackle these complex problems. If transitioning to home care is considered, the patient should be referred to the local Needs Assessment Coordination Service, which will provide information about the options available, such as whether they need care in a dementia unit. When a patient is transferred to inpatient care and is transferred to a different primary healthcare provider, it should be ensured that the use of their medication has been conveyed accurately.
Indicators for Obtaining Expert Palliative Care
When deciding whether a person with dementia should be referred to specialist palliative care, the following indicators of increased needs or general decline should be considered:
• Inability to walk without help
• Urinary and fecal incontinence,
• Speaking in a meaningless manner all the time,
• Inability to perform Daily Living Activities,
• Urinary tract infection
Severe pressure sores
• Reduced oral intake
Coughing and choking on food
One way to assess a person’s ability to perform daily living activities is to use the Barthel Scale. Patients scoring less than three may meet the criteria for referral to specialist palliative care. NB Referral criteria also include the question: Would you be surprised if the patient died within a year? However, this issue has been found to be largely unreliable in terms of sensitivity and specificity, particularly in predicting mortality for non-cancer diagnoses.
More resources on advanced dementia care for healthcare professionals available at
Writer: Ozlem Guvenc Agaoglu